4th Chemo down...

I had my 4th (and hopefully) final chemo on Friday.   I had slowly recovered from whatever I was fighting off the previous week and my bloods were fine for going ahead with the cycle.  Although I do feel as if I've dragged myself through this recent cycle, so hoping this one isn't too bad and nothing untoward crops up!  My chest hasn't been 100% in recent weeks but Newcastle seemed happy enough for me to proceed and the CF team are keeping eye on chest.   My lung function is still fairly stable on home monitor (still not safe to get it measured at hospital) so that is at least reassuring.  My weight is struggling - I'm the lightest I've been since transplant, although the steroids mean my face doesn't look like I've lost any!  I think once chemo is finished I will find it easier to put weight back on, so just focusing on keeping it stable with supplements.

The doctor is hoping I can be fitted in for another full body CT scan in couple weeks - enough time for cycle 4 to work but before 5th cycle would be due.  The current plan would be to continue Rituxemab infusion alone if nodes still present, but to remove the CHOP (chemo) part of "R-CHOP" in order to reduce risk of further sepsis and admission (especially with Covid rates).  I got the impression it was likely that will need to continue Rituxemab so I am just assuming that will happen at the moment and would be due 18th dec.  I am just so glad that wont be getting the chemo part, as that would just have been hitting hard by Christmas day.  Thank goodness for small mercies!!

Speaking of Christmas - we have decided to just stay here and have it with the three of us.   I really can't afford to take risks at the 11th hour when we are so near having a vaccine and I've kept myself protected for this long.   I was 100% decided after having a phone appointment with Newcastle.   The consultant has been phoning every month for a review and I happened to have appointment the day government announced about the 5 days relaxation of rules, so they did ask what I was planning to do at Christmas.   They mentioned that there have been deaths in patients with solid organ transplants and patients very unwell in ITU - especially given my total immunosuppression from chemo (which will remain for some time after I finish) they advised that anyone visiting me should really have been isolating for 2 weeks prior.    Mum essentially has to isolate in order to take me to chemo appointments (when Andrew working) and we wear masks for car journey.   It's impossible for everyone to isolate in lead up to Christmas so it's just easier for me to do my own thing and stay as safe as possible.

I am really surprised at the 5 day relaxation of rules across the UK,  being able to travel from high rate areas to low, and no social distancing indoors  - it seems completely senseless to me.  I had expected maybe a couple of days, local travel and social distancing in place.  I understand that people are fed up with covid rules and need some family time - but I just think it will prolong the whole thing and we will be back in lockdown in January with another spike in cases.  Although a vaccine is on the horizon we need to get there without unnecessary deaths.   I certainly wouldn't want anyone to be on there own (and thought bubbles helped with this) and I think people would have made their own choices regardless.   However I have spoken to quite a few people who intended to stay at home, and now feel pressured to visit family because it technically "allowed".   It's also very frustrating to hear the government is considering prolonging the school Christmas break to compensate for the 5 day relaxation of rules - as if the children haven't missed enough school as it is.   It's so tricky - although children tend to get mild illness, during the 2nd wave they have become the ones most likely to be bringing it into the home, because they can still transmit it.  So any increase in overall rates following Christmas will increase my risk from Estelle.  But this has to be balanced against her need to be in school, which is so important.  We will just continue to do our best to keep safe.

I'll try to blog in couple weeks once I know more about what's happening next, as I am expecting to be pretty wiped out in coming days.   On a positive we did get our Christmas tree up (early I know) as I didn't think I would be fit by next weekend.  It's looking lovely and festive  - nothing nicer than some twinkly lights to cheer you up :-)

Hanging on in there..

I'm just passing mid cycle again and hopefully it will be smooth sailing between now and chemo next Friday.   I was feeling not bad after the last chemo - bar the usual nausea and sore mouth.  I seemed to have a lot of nervous energy though (I think steroid induced) and was finding it hard to be inactive - I kept sorting through drawers and trying to organise the playroom, in anticipation of Christmas.  It's good having the energy to get some things done but to be honest the internal feeling of restlessness is quite unpleasant.  I find it hard to sleep and switch off during these periods despite knowing my body probably needs to slow down.  On stopping the steroids after the 5 days I then did crash energy wise and more or less ground to a halt!  I have piles of clothes sitting out mid sorting that I didn't have energy to finish - will have to wait until my next steroid boost haha.

I have actually feeling quite rough this week and have had a borderline fever, headache, achiness and a general feeling of being unwell.  I honestly thought I was headed for another sepsis as that's how it started the last time!  I spoke to the Beatson and the CF team - as my temperature was borderline and seemed to be settling,  they were keen for me to stay at home unless worsened.  Thankfully my temperature has stayed down and I've certainly not got any worse.   This decision not to be reviewed unless really necessary was influenced by the covid situation locally and weighing up the risks of attending a hospital when rates are so high.  For this reason, I am more than glad we have moved to level 4 in an effort to drive down numbers.  I could argue that the restrictions in level 4 maybe don't even go far enough - a lot of places will still be open and it's nowhere near the measures taken at the start of lockdown, but I really hope it will be enough to bring things a bit more under control.  It would certainly help make me feel safer going for treatments.

On a similar note, I am not sure how I feel about all the ongoing discussions about relaxing the rules for Christmas.   I understand how desperate people are to see family at this time of year, but it does seem really counterintuitive to relax the rules for the sake of one day - and possibly then have an increase in cases mid winter when hospitals will already be under strain.  I think people will make their own decisions anyway but if the government gives the green light for family gatherings, will people then feel under pressure to meet up, when they might not be completely comfortable?  I wouldn't like to think anyone would be on their own, and would hope the bubbles idea would make sure this wouldn't happen.   I am honestly not sure what the answer is  - I guess there isn't one!  I love Christmas and I feel sad thinking of not seeing people - but I have also spent so long shielding, coping with hospital admissions alone and making hard decisions about protecting myself, that it would seem ridiculous to throw that away!  I guess we will just have to see what happens in the coming weeks..

The emerging vaccines is a great positive in the news just now.   At the moment we don't know how long the immunity from them will last, or if they are effective in various patient groups...but it's still a huge step forward!   I was reading the government website detailing the interim advice on vaccine priority and was quite surprised to see that people with underlying health issues are actually quite far down the priority list (I would be no. 6 group)  - read here.  Obviously care home staff and NHS staff are first in line, then those over 80; over 75; over 70;  over 65 ...then high risk adults under 65.  It's interesting to note that age really is a huge factor in covid risk -  simply being over 65 is more risky than people realise.  Hopefully once vaccines are approved, the programmes can be rolled out quickly so that we all can get a degree of protection and start getting back towards some normality!

In other news Estelle is getting excited about Christmas and having a hard time deciding what to put in her letter to Santa haha.   It will be a much quieter build up this year, but Estelle is happy just doing things at home  - especially a bit of Christmas crafting, baking and just enjoying having mummy and daddy playing lego and playmobil.  In some ways I'm quite glad not to have so many commercial events - the year before last we saw so many Santa's that even Estelle was getting oversaturated....and also wondering why none of them looked exactly the same!  You can get quite caught up in booking all these 'magical' events, then run yourself ragged trying to fit everything in.  Maybe we can benefit from slowing down a bit this year :-)

3rd cycle down!

My excellent news for this week is that the CT scan showed a significant reduction in the abdominal lymph nodes after 2 cycles!! I am beyond thrilled!  I think they are pretty much back to where they were in August at time of diagnosis (in fact I think smaller than this!) so we have managed to get control of the rapid growth that had occurred just prior to chemo.  This would be consistent with my pain - over the last few weeks I have only been taking my long acting painkillers and not needing the short acting for node pain.  The EBV levels are not detectable anymore which is also fantastic.  Given the good response to the 2 cycles, the plan is to hopefully stop chemo at 4 cycles. I will get scanned again after the 4th.  The aim of treatment is for complete remission but if nodes were still present after 4th cycle then remission might still be possible by continuing the Rituxemab infusions alone, which would be easier to tolerate and much less toxic.   I think treatment plans would be much more straight forward if I didn't have the chronic lung rejection, as this is obviously a huge factor.  - we are trying to balance risks (infection, covid rates, side effects) against benefits (quicker response from chemo, protection of lung function). The chemotherapy, although putting me at risk of infection, is ironically also protecting me from rejection.  It's a case of taking it cycle by cycle and making the right choice for me at that time but it's all looking very positive and we are making excellent progress!

I had my third chemo yesterday - getting the chemo itself is the easy bit, so I'm not looking forward to the next couple of weeks but at least I know more what to expect.  The most important thing is avoiding infection again - I managed last cycle so fingers crossed I can avoid it this cycle.  It's quite tricky with Estelle being at school as she is being exposed to all sorts of winter bugs (never mind thinking about covid!) but I'm am trying to keep my distance mid cycle when my white cells are at their lowest.  The biggest worry about needing admission for infection at the moment is the covid situation in Glasgow - the hospitals are getting pretty full and obviously my usual respiratory ward will have numerous patients but I have to just keep going and keep as safe as I can.

In other news, Estelle had a lovely Halloween.  She dressed up as Mildred Hubble from Worst Witch and was really pleased with her outfit.  She is most particular about getting it exactly right - I even had to dye a school shirt grey and laminate a badge for the outfit!  We did some dooking for apples and I made a Halloween treasure hunt in the house.  We had lots of decorations up (mostly thanks to my lovely cousin Sarah!) which Estelle loved.  I did also paint my face and bald head white to look like Uncle Fester, which was rather amusing - but I'll maybe not post the photo here!  We put glowsticks in decorated milk cartons (great idea via facebook) and decorated cupcakes.  I was exhausted but worth it for Estelle - who said she had the best halloween but maybe next year I could hide 50 things on the treasure hunt instead of 8 haha!!

I'll try and post again once the initial side effects of this cycle have passed.  Lots of love to all my family and friends down south who are currently in lock down again.   Keep safe x

 Mid Cycle

I have hopefully now passed the critical part of cycle where most at risk of infection (I'm scared to speak too soon!) so hoping it's smooth sailing until round 3 at the end of next week.  My mouth did become quite painful again but has eased up now - although I still can't taste anything which is frustrating.  I'm packing in the supplements though and think my weight has steadied out.

My CT scan was changed to next week, as the doctor felt it was too close to 2nd cycle so wouldn't have allowed enough time to see impact of that on the nodes.  It also would have fallen at my most vulnerable point and given the covid rates in Glasgow, it would have felt very risky going for scans at that time.  So the appointment is now on Tuesday.  I will have outpatient clinic on friday 6th before my chemo, although I don't know if the scan results will be available that early.   I must admit that I feel anxious even thinking about it!

I've been trying to keep myself occupied with some more crafting and some early Christmas shopping - I feel that need to be very organised in case I am unwell nearer the time!  It is going to be a very strange year for everyone with the covid situation.  I really can't see things improving much before Christmas so it might just be the three of us at home this year.   I can't take any risks travelling or breaking rules for the sake of one day.  My planned chemo would also be on 18th Dec, meaning that Christmas would fall at the time I would be most at risk of infection.  We will just have to see what happens and do what's best at the time.   There will be plenty time for celebrating when I recover from this and when covid is a more distant memory for us all.   Estelle will be happy as long as Santa knows where we are :-)

In other news, Andrew managed to break his big toe last weekend!  He was running up the stairs because Estelle was shouting from her bed - and cracked his toe into the stair.  I did feel very sorry for him as it did swell up immediately and went black and blue!  He has had it x-rayed and there is a wee fracture, but thankfully not needing any further treatment.  He has managed to hobble along to the bus stop with Estelle all week and it is starting to heal now.  Just what he needed in the middle of looking after both Estelle and myself!  Estelle thought it was a great story of course and has told everyone in her class (of course she has also told them all that I am bald!)

I'm feeling very tired now, which is exactly what happened at this time last cycle, so planning to just have a quiet week.   The school are having some halloween games tomorrow but unfortunately they can't go in fancy dress this year.  However she is planning to dress up at home and we will do some fun games with her - dooking for apples anyone?! 

I'll probably not update until after next chemo unless I have any news about my scan.

In the meantime, Happy Halloween.......!

 Round 2

After my last blog I did start to feel gradually better following the infection.  It was nice to have a few days of feeling more like myself.  It was a busy week with a number of different hospital appointments, which was tiring.   I found during the hospital admission my hair had started rapidly falling out and by last week it was only straggly and awful looking.  I decided it would be better just to get Andrew to shave it off - yes, that's how much I trust him!   We snipped it short then used the electric hair trimmer to shave the rest.  It was a strange experience - I was ok at the start, became emotional mid way then felt better after it was done.  It actually didn't look as bad as I expected and my head was also not as big as I thought it was haha!  It felt a bit tender afterwards but feels fine now.  I also noticed how chilly it can be without hair!  Estelle was there for the process (at her choice) as I felt it was better for her to be involved and see what was happening, rather than getting a shock seeing it all gone.  We had been discussing it a lot in the lead up and she had been helping me choose scarfs and hats.   She also has grasped the concept that the chemo is killing the cancer cells but at same time has killed the hair cells, so she has a good understanding.  She mostly thought it was quite hilarious and said I looked like a cute wee troll!  She also took great delight in shouting "night night baldy!" on her way to bed.  In the house I am not bothering wearing scarfs etc as I might as well be comfortable!  I have now received an NHS wigs to try but following chemo haven't had a chance to try it properly.  It looks very like my hair colour and style but I need to get it sitting in the correct parting, which is proving trickier than I thought. It's a shame I can't just go into the hair dresser and let them sort it.

After pre assessment clinic last week it was decided that my 2nd chemo would go ahead as planned.  This was as a day patient, so much better than having to stay in hospital.   The day unit was nice, with individual rooms and comfy big recliner chairs to sit on.   The rituxemab could go quicker this time (as had no reactions last time) so only took an hour, then I had the rest of the chemo.  I had a clinic appointment at 10.30am before chemo, so was actually there until 5pm, so was a very long day.  However I passed the time easily with netflix and a chat with my friend Nicola who works at the Beatson (very handy!)   We had a bit of trouble finding a vein but managed in the end - I hope they hold out for the following sessions!

This time I felt more prepared for the side effects.  I have been using both anti sickness on regular basis and although felt really quite nauseated the first 2 days, it does seem to be easing now.  My mouth hasn't been as sore as last time (as of yet!) although unfortunately my taste is altered, so everything tastes a bit weird!  This is making eating more of a chore but I have increased my supplements after losing weight during last admission.  I start the injections to boost white cell at end of week and am not looking forward to the bone pain - I am hoping that last time some of that was due to infection. Overall I feel I am coping better this time round, so hope that continues!

I will be getting a CT scan at end of week to see if nodes have started responding to treatment, although not sure if that will be reported before my next chemo.  I know I will be very nervous getting the results but am trying not to think about it just now.

In other ways life continues as usual! Estelle enjoyed her October break even though we couldn't go anywhere other than the park.  She is actually very easily pleased though and loves being outdoors!  She also loves crafts and drawing, so I was able to do some Halloween crafts - we painted conkers to make Halloween decorations and she loves if I will sit and draw with her.   I am also trying to do some crafts to keep my mind occupied - although finding my dexterity is a bit off so the outcomes are variable.

My next chemo will be 6th November so I will just focus on getting to that point in one piece and hopefully avoid any admissions before then!  Thank you for all the kind messages I have been receiving - it really does help keep me going!

 It never rains but it pours!

After my last blog I haven't been too well and just escaped from hospital again last night, after being admitted last Tuesday with an infection.   

I had woken last weekend with an awful migraine and felt pretty grim all weekend, spending most of it lying down in bed.  I had also started the injections to stimulate my bone marrow to produce more white cells, as this is the point in the cycle where I would be most susceptible to infection.   I felt really achey and generally miserable, but thought some of that was due to the injection itself, which can cause bone and joint pain.   I had  a review at the Beatson on Monday, and again, we put a lot of my symptoms down to the migraine, plus injection side effects. I didn't have a fever at this point but had been checking it frequently as my body felt the way it does when I have a fever.

Tuesday arrived and I felt even more grim than before.  I did then have an obvious fever, so had to phone the Beatson helpline (there is a 24hr number to call if you get a fever).   Normal protocol would be review at the Beatson immediately, however due to Covid, they can't see people with a fever in case it is coronavirus, which would be catastrophic to introduce to a cancer hospital.   So they arranged for me to be seen at the QE through the emergency route, with the plan that haematology would review there.  I wont go into all the details, but it didn't work out as smoothly as hoped, and there was a bit of confusion when I arrived at the assessment unit.  The bottom line however was that my neutrophils (white cells - fight infection) were zero, so my body had no way of fighting off infection.  I was therefore admitted and started on IV antibiotics immediately.    This is called neutropenic sepsis, and is a common complication of chemotherapy.   There was no clear source of infection but they treat with antibiotics that cover a broad spectrum of bacteria, so it doesn't really matter where the infection is coming from.  In fact, in these cases you often never work out the source.   Thankfully the fever settled quickly and I started to feel much better.   I was moved to the CF ward as they are best placed to co-ordinate my care between my CF issues, haematology and transplant team.   I had a few days of IVs, continue the injections to stimulate my bone marrow and thankfully my white cell count came back up.   I got home last night on oral antibiotics to finish at home.  

Although I was aware this is a potential complication, it is a bit unfortunate it happened after the first cycle.   It might happen again but at least I know what to expect, and in future then plan would be to be admitted via the CF team, which should be a smoother process.   They also managed to clarify that I was able to tolerate an antibiotic I previously had a reaction to - so this is useful for future management!   It was tough being in hospital again so soon, as I still wasn't allowed any visitors.  Although I know this is the same for all patients at the moment and at least I had my phone and could make video calls with Estelle.   She found it difficult coming home from school to find I was back in hospital, but she is coping really well and is such a trooper.  

Unfortunately, my hair started to come out during my hospital stay.  It's more like when I brush it that huge amounts come out on my brush.   I have managed to speak to a hairdresser in Glasgow who deals with NHS wigs, so they have ordered one that looks most similar to my own hair (from photos I sent her).  I have a phone appointment during the week with them to discuss the hair loss and next steps.  I think they will be able to just send me the wig as opposed to be risking going into the shop - I don't think any extra risks are worth it just now! I do have the option of buying my own wig if I want something fancier, but I've heard really good things about the NHS ones, so makes sense to go down this route first, or at least until it feels safer to go into a shop.  My mouth has been a lot better this week, as has the nausea.  My appetite isn't great but I'm managing to eat small meals and take the supplements.  

Due to having a fever, I obviously had to have a covid test.   Although this didn't affect me directly, it meant that Andrew and Estelle had to self isolate until I got a negative result (even though they were well). It meant Estelle had to miss couple days of school, as is took 48hrs to get result back, and they were both stuck in the house.  The bottom line is though that if you have either a fever, new cough, or loss smell/taste then you have to assume it could be covid until proven otherwise.  There is absolutely no way of knowing from symptoms alone - the type of cough, whether you have a runny nose,  how high the fever was, whether it was a one off fever - it really doesn't matter - they all count as covid until you get a negative test.  The rules are there to protect everyone, and although its annoying being stuck at home, it's not that much of a hardship when you might be helping prevent the spread of covid.  We all need to be thinking of each other during this pandemic and follow guidance, whether we agree with it or not.  It's the only way we will ever get out of this situation.  I know people think its their right to take a risk with their own health - that's fair enough in theory - but it's not right when that's at the cost of putting other people at risk.  We need to keep community transmission rates as low as possible over winter in order that the NHS can cope with a rise in covid cases (as well as the normal winter rise in admissions).    There were major issues with beds when I was admitted and we are only in October.  Hopefully we can all work together to get through this and, like everyone, I can't wait until life is a little more normal!

I have clinic this week before my next chemo, but I think as long as white cells are ok, then chemo will go ahead on Friday as planned.   I know what to expect this time with regards the nausea and painful mouth, so hopefully will be better equipped to deal with that.   I've read that the first session can be the worst for some side effects due to higher tumour load, so maybe it wont be quite as bad this time.  I imagine the tiredness probably builds with sessions, like it did with my radiotherapy, but I can cope with that.  I can't believe 2 weeks have passed already - I'll be half way there before I know it!

Round One

The Hospital Stay

So after my last blog, the scans were reviewed and it was decided I was to be admitted to the Beatson to start chemotherapy.   The consultant had been surprised by the growth of the nodes despite having reduced immunosuppression, and in fact there had been new nodes in another area of my abdomen.  Therefore it was felt that both the Rituxemab and chemotherapy would be required, and because of my ongoing pain, she wanted to start this asap.

I went into the haematology ward at the Beatson on Friday morning.  I handed over my spread sheet of medications (you have no idea!) and we agreed that I could keep my own meds and self administer, which is much simpler all round! I had an cardiac echo in the afternoon (heart needs to be tip top for chemo)  and then had the rituximab infusion late afternoon.  This is the antibody drug that attaches to the cancer cells, marking them for my own immune system to destroy.  The first infusion has to be done very slowly as there can be some side effects, so in total it took about 4.5 hrs.  Every 30 mins they check observations (BP, temp, pulse, oxygen), and if all ok, the infusion rate is increased.   I had one wee fright when I developed some sudden indigestion pain, which needed doctor review and ECG to check it wasn't cardiac.  We surmised it was likely the high dose prednisolone tablets I had taken the hour before - and then I had been lying down flat.  All the drama for some heartburn haha!  It was a really exhausting day - so much new information.  I hadn't really read much about the chemo ahead of time as I had only known for a day before and was more focused on getting ready for admission.  I was given written material and the ward doctor went through side effects - it was all quite overwhelming. Despite being exhausted I was also very awake and alert from the high dose prednisolone but got a sleeping tablet which allowed me to get a great rest - I only woke a few times because had IV fluids so machine kept alarming - but I just buzzed and went back to sleep!

On Saturday I had the other chemotherapy drugs - vincristine, cyclophosphamide and doxorubicin (and more prednisolone). They give some anti sickness first, and then its a 5 minute infusion and two bolus injections - so actually the process itself was very quick and uneventful.   As tumour cells break down they release their contents into the blood stream which can cause chemical changes - so bloods are monitored and I had another infusion with a drug to protect kidneys from these changes.  These tend to be worse in first cycle, because there is a higher load of tumour cells.  Fortunately my bloods were stable.  I was started on an anti-viral drug because I'm prone to cold sores, which we want to avoid. 

The nurse also spent time going through the side effects again and I felt quite teary and overwhelmed again.  She said that I will most likely lose my hair (possibly eyebrows/eyelashes as well) and this can start a couple of weeks after first dose.  I was aware of this from the day before, as I had been given a prescription for NHS wig.  Normally you would attend the wellbeing centre at the Beatson, where they have a hair dresser who can explain the process and organise a wig etc.  However because of Covid, the wellbeing centre has been closed since March!  The nurse was able to get me a couple of phone numbers for hair dressers in Glasgow who accept NHS prescriptions for wigs.   She said it is best to try and organise this before your hair falls out, so that the hair dresser can see what my own hair looks like for the best match.  Of course you could choose something completely different ......maybe I'll go blonde haha!   My understanding is that I can put money towards the wig to upgrade - I have seen a real hair wigs on people before and they are amazing these days and hard to tell its a wig.  I don't know how comfortable they are to wear though and imagine I might opt for the scarf/turban type option for day to day.  They also advised that most people get hair cut quite short when it starts coming up, then maybe shave it, as this is probably less traumatic.  I'm not sure what to do about this though as I don't want to risk going to hair dresser because of covid - especially given the current Glasgow rates!

The main side effects make sense when you understand what chemotherapy drugs do.  In our body we replace cells by cell division - when each cell divides into two exact replicas, then those two divide into another two...and so forth.  Chemotherapy drugs interrupt this process at various points in the cycle, and by doing so kill of the rapidly dividing cancer cells.  However the drugs will also kill of some of the normal cells that are also rapidly dividing -  the ones that we replace constantly are hair, nails, skin, mouth, digestive tract and bone marrow (where our blood cells are made).  I'm not going to list everything here as there is no point worrying about some things that might never happen, but its helpful for me to have some idea of what to expect.

The rest of the day after chemo was uneventful and I actually felt reasonably ok, other than being tired.  On Sunday however I woke up feeling very nauseated, which is really common with chemo.  I was already on some anti sickness tablets before admission (due to side effects from other meds) but they didn't help, so I started on a different one and back on IV fluids.  I had a fundoplication surgery a long time ago (where they tighten bottom gullet to stop acid coming up) so I can't physically be sick.   This has its pros and cons - I can't get relief from the nausea, but at least I keep down fluids and medication! My blood sugars also went crazily high because of the prednisolone, but seemed to have settled now I'm back on usual dose.  

Sunday was also a difficult day as it was also Frances Ann's birthday and I don't think I have ever spent that on my own before.  I had been coping fairly well without visitors but really did miss this on Sunday.  I was able to make phone calls and video calls but its' really not the same - and in some ways made me feel more upset.   I had a fairly rough day with the nausea but passed my time with netflix and naps.   I must say the nursing staff in the wards were so lovely and amazing though and took time to chat to me during the day.

Monday came round and although I still felt very nauseated I was desperate to get home. Although it was a bank holiday luckily my consultant was on call, so she was in for a ward round.  It was agreed I could go home with anti sickness tablets and various other meds, with review back at clinic next week.

I didn't get home until early evening as was waiting on medication, but I was happy enough just resting.

Back Home

I've had a couple of days at home now and have been exhausted.  I finished the high dose prednisolone yesterday so hoping my sleep settles.  The nausea has been tricky but does seem a bit better today - they said it usually improves after a few days.   The main symptom at the moment is painful burning mouth/gullet.  It's really sore to swallow but I'm managing to eat some soft foods.  Even diluting juice is burning in my mouth,  but fortunately I do like milk, so mostly been drinking that, which is quite soothing.  I have a special mouth wash but they are going to get me something else as well.  It's been really tricky swallowing my many CF/transplant related tablets!  I'm managing to space these out a bit through the day though.  I am feeling really emotional, which is not my usual and keep randomly crying.  I think it all seemed to happen so fast and I've barely had time to process.  My brain feels so foggy as well - I keep getting dates mixed up and finding it hard to organise myself.   Luckily Andrew is there to get Estelle sorted for school etc and remind me what day it is haha.

What's next

As bone marrow is affected by the chemo, I might start to get a drop in white blood cells (fight infection), red blood cells and platelets.  So I start some injections for 5 days mid cycle to stimulate replacement of these.  I can do these at home though - it's just like my insulin injections.  I'll have to be super careful about avoiding infection - although due to covid I'm not seeing anyone, so that's not too different.   I got bloods for my anti rejection drug levels today and will have review at Beatson next week.   I will then be seen at pre assessment clinic on 14th Oct by the nurse - I think this is just checking bloods and making sure I'm ok for next cycle - which will be 16th Oct.  This will be done as day patient and all drugs will be given same day.  They did manage to give the drugs through a tiny cannula in my hand, so I'm hoping my veins can recover between cycles. 

The usual process is chemo every 3 weeks for 6 cycles.  However the plan is to give me another scan after 2 cycles to see how things are progressing.  Hopefully we will see some shrinkage at that point! 

And here ends that mammoth entry -which was largely for my own benefit to help process!  Life is pretty tough just now, but I'm positive we can get on top of this PTLD and get back to some degree of normality and stability.  Estelle is desperate for me to be well again, so I can "take me to the skate park" and that's my motivation and future goal!

 Blogged too soon....!

I think I tempted fate by blogging this morning!  I had a phone call from the haem-oncologist this afternoon as my scan had just been reported.  It is still due to be discussed with team tomorrow but the bottom line is that the nodes have actually grown.  If they had showed even some reduction then we would have moved to the rituximab treatment, but since it's actually progressed then I will be getting rituximab alongside chemotherapy (this is called R-CHOP).  I was taken by surprise as I had managed to convince myself that I wasn't going to need chemo and that I was in fact imagining some of the pain ...wishful thinking!

As my health is just a tad complicated then I need to be inpatient for the first session - hopefully just for 2-3 days.  I would get rituximab infusion one day and then chemo the next.  I need a negative covid swab before admission so this is getting done tomorrow.....if that's clear then I'll be admitted to the Beaston on Friday to get started (as long as there is a bed).

I'm glad that things are moving swiftly but disappointed that the nodes haven't even shrunk a little with the reduced immunupression.  It does make me feel more anxious for the future but I know I can only take it one step at a time!   Unfortunately I wont be allowed any visitors this time, not even Andrew, so it will be very strange.  I'm pretty used to being in hospitals though and it wont be for long.

I'll post again once I know for sure things are going ahead.  I'm not going to read up on the chemo just now - I'll just try and get a good sleep and organise myself tomorrow.  Any recommendations for easy read kindle books and trashy netflix please send my way!

Waiting....

I had the PET scan successfully last friday.  I had been quite worried about whether it would go ahead because your blood glucose levels need to be within quite strict limits.  This is because the radioactive tracer is attached to a glucose like substance, which is then taken into cells.   Normally it wouldn't be an issue but because my steroids have been increased, my bloods sugars have been wild!  Luckily they were ok on the day!  

I did managed to speak with the lymphoma nurse yesterday.   My scan will be discussed at the team meeting tomorrow and they will decide if need another CT and/or what next steps are.   I have been doing a lot more reading about PTLD and it does sound as if a lot of people do response to the reduction in immunosuppression alone - so it still might be the case that I don't need more treatment.  I will post once I know myself what is happening!

Otherwise, I have been ok.  I have added in some more supplements for my weight and have been eating better, so hopefully that will now go in right direction.  My lung function has stayed stable so far.  I am feeling generally tired and not quite myself, but to be honest, half of that might simply be the stress and anxiety!  I do struggle with being in limbo and always cope better with a plan!

I think its also been a big adjustment with Estelle going back to school.   I really did need the space and time to myself, but it is also harder to keep a good routine when she isn't around.  The covid situation is frustrating for everyone now and it is really hard thinking about going into winter with numbers rising.  Locally we have been in lockdown for few weeks so yesterdays announcement wasn't much change for us.  It is difficult not being able to have anyone to visit the house, as the weather isn't really ideal for garden visits now!  I am so lucky to have Andrew working at home though, or I think I would feel very isolated.   It's really hard not having mum and dad to visit - I would normally see mum quite often and it all feels very strange.  I only saw her last week as needed someone to take me to hospital appointment (can't drive on the current pain meds) and Andrew needed to stay here to get Estelle for school.  It's not great for mum either, as she would really like to be here keeping me company.  I think its important to follow the rules though - if everyone thinks they are the exception to the rules, then nothing will ever change.  What we do now is going to affect how Scotland copes with covid over the winter and I am certainly not going to be responsible for adding to the spread!

Hopefully by the end of this week I will have more to report!

 First Appointment

I had my first appointment with the haematology/oncology consultant this morning.  We spent time going over the history, my last scans, took lots of bloods and discussed how we move forward.  I feel better having now met someone and discussed what my treatment might look like, as opposed to reading things online and not being quite sure what applied to my case.

She confirmed that Post Transplant Lymphoproliferative Disease (PTLD) is an umbrella term for a number of different types of lymphoma which can occur after a transplant - and that are related to the body being immunosuppressed.   My specific type (if you look through a microscope) is "diffuse large B cell lymphoma" which can occur in non transplanted people as well.  In those cases chemo would be used first line, but in the more specific type occurring after transplant then treatment is slightly different.

As I previously mentioned the first line treatment is reduction of immunosuppressants.  The hope here is that my body's own immune system is woken up and given a chance to recognise the cancer cells and start getting rid of them through the normal immune process.    The balance of course is not allowing the immune system to become active enough to notice the transplanted lungs and kick of rejection again.  They normally allow around 4 weeks on reduced immunusuppression alone (which I have done now) before deciding if this is effective.  So for this reason I will have a further scans on Friday and also had EBV bloods checked today (which we hope are reducing, indicating the body is getting rid of the abnormal cells containing EBV).   The aim is to get rid of the cancer, not just control it - so we would need to see a significant change.  At the same time I need to monitor lung function - so far this seems to have remained stable on my home monitor.

The scan on friday is a PET scan.  They inject a radioactive tracer into the blood stream - this is taken up by the body in areas of high cell turnover - which would be seen in cancer cells (especially this type of lymphoma).  These light up on the scan as "hot spots" and give a good indication of where the nodes are.  This is useful for giving a staging (e.g are there nodes in more than one site, or activity within any organs) . Although nothing else was seen on  the last CT of my chest and neck, this is more sensitive.  The staging itself wont actually affect what treatment I get, and even advanced stages (e.g nodes in lots of different areas) would still be expected to respond to treatment - however PET scan will be useful for monitoring response.  The CT of my abdomen will also be repeated to compare the size of nodes that were seen previously.

After my bloods and scans are are back, the doctor will let me know if we need to move onto 2nd line treatment.  This is a drug called Rituximab - it's a really specific antibody that attaches itself to the cancer cells - basically marking them for my body to nuke.  This would be a weekly IV infusion for 4 weeks - at which point scans would be repeated to check response. If I was responding they might do a 2nd month of the drug and rescan.  If I didn't respond well enough after the first round then they would move to chemotherapy.  We didn't discuss that in depth today as I think we need to concentrate on one step at a time.

I am on long acting painkillers just now and have mostly been comfortable enough, but over the weekend did have quite a bit of pain again.  This does make me suspect that the nodes can't have reduced significantly.  I have also been very fatigued and getting sweats.   These can be associated with lymphoma but also could be for a number of other reasons.  My weight has dropped a few kg since discharge (despite taking supplements) and today was lowest its been since transplant.  I need to get on top of this ASAP!!

I am coping ok and just concentrating on hopefully getting on top of this as soon as possible.  We are in local lockdown so even if I wanted visitors, I can't have anyone to the house.   The covid situation is very frustrating at the moment as I really need to avoid adding any further complications, but it would be nice to have things to look forward to for a change.  I'm not bored at home by any means, and have lots of craft things I can do, and am also enjoying time on my own after 5 months of home schooling! So glad fluffy Dexter is here to cheer me up as well!

I will report back once I have had scans and know if we need to move onto more active treatment! 

 Mini Update

I spoke to my CF consultant and transplant consultant today.   The appointment with haem-oncology is in 2 weeks time.   The first line treatment is to reduce immunosuppression (since this is main cause of PTLD).  One of my drugs was stopped and the other reduced to minimal level after the CT scan 2 weeks ago (before we even had biopsy) so at least we are quick of the mark with this.  I think we can then review how the lymphoma has responded to these changes.  This will have to be weighed up against the pain I am getting from the enlarged nodes, how much of a response I have to the drop in anti rejection drugs vs the potential side effects of other treatment options.  My understanding is that they can use the EBV level in my blood to guide response (as well as further scanning as needed) but I'm not sure if bloods will get checked again at the appointment in 2 weeks, or if that is too soon.  It will be good to meet with the doctor and go over the plan.

The biggest risk having much lower levels of immunosuppression is that my rejection returns - so I have to monitor lung function twice weekly on my home monitor as well and keep Newcastle informed of any changes. 

I am so impatient though - I would like to just get straight in and nuke these nodes with the strongest treatment going and I find it hard to watch and wait.  I feel like we did this for so long with my chronic rejection - just waiting to see month on month if there were any changes and never feeling very settled between.   The pain does seem more under control just now, so hopefully I can try to get some normality while we wait.   However in saying that, I am not planning to see anyone just now or go anywhere - due to covid risks, rather than related to the lymphoma.  I see the numbers rising in the west of Scotland again and as the summer weather has taken a turn, I'm not keen to have lots of people in the house, where it's hard to properly distance.   I'm anxious enough that Estelle has to go to school, so I have to try and keep myself as safe as possible otherwise.

Next update will probably be after my appointment in couple weeks!

 YET AGAIN, LIFE CHANGES IN THE BLINK OF AN EYE...

Post Transplant Lymphoproliferative Disorder (PTLD)

3 days ago it was confirmed that I have a type of Lymphoma called PTLD.   This condition is a type of lymphoma that can develop in people who have had organ transplants and occurs due the ongoing immunsuppression required to prevent rejection.  Although it's one of the most common cancers to occur post transplant, it is still very rare - only affecting around 3% transplanted patients.

I am not going to use this particular blog post to explain how I feel about this new turn of events, but simply to explain what PTLD actually is - so I can make sense of it myself but also in a way that hopefully my friends and family can find useful.

What is a lymphoma?

Lymphoma is a cancer of the lymphatic system.   One of the main functions of the lymphatic system is fighting infection - and therefore includes parts of the body that make immune cells (thymus and bone marrow) and places where immune cells are stored ready for action (lymph nodes, spleen, tonsils).    In lymphoma it is the white bloods cells called Lymphocytes that become abnormal and they tend to collect in the lymph nodes.  There are about 60 different types of lymphomas, all with their own features, treatments and prognosis.  I only need to concentrate on the specifics of PTLD.  There are different types and I am still waiting to hear about specifics.

Why does PTLD occur?

There is usually an association with EBV (Epstein Barr virus).  9/10 people have had EBV at some point - it's the virus that causes glandular fever, but often can produce no symptoms.  It stays latent within cells and our immune system keeps it under check.  If our immune system isn't working properly (e.g after transplant anti rejections to suppress the immune system) then the EBV can flair up and cause the lymphocytes to divide abnormally.   Alternatively sometimes the EBV is introduced with the transplanted organ.   Some people with PTLD don't have EBV and the causes here are more unknown.  My blood came back as EBV +ve.  This will be useful when monitoring treatment response as they can see if the EBV level in my blood goes down.

Symptoms of PTLD

Most commonly people notice painless swelling of lymph node in the neck, armpit or groin.   You can also experience 'local symptoms' where enlarged nodes are pressing on nearby tissues.   I had presented with severe back and abdominal pain which had come on suddenly and I couldn't manage at home.  I'd actually had a hospital admission a few weeks prior with similar pain but it was thought to be a bowel obstruction at the time  - I think ironically there had been two things going on at same time.  However when the pain returned it was so extreme, so I was admitted again and had abdominal CT.  This showed three main groups of enlarged, necrotic nodes in my abdomen, along with lots of singular swollen nodes.  The lymph nodes are at the back of my abdomen - hence me feeling it as intense back pain where nodes are causing compression.

PTLD can cause other body symptoms such as fatigue, weight loss, night sweats, fever.  I hadn't noticed anything in particular and actually thought I was quite well over the period of lock down.  I was of course exhausted but assumed that was looking after Estelle full time.

Diagnosis 

A biopsy of lymph nodes is the only way to diagnose.   I had CT scans of chest and neck to see if there were any nodes easier to get to,  but there didn't seem to be.  It's good they hadn't spread further but it did make biopsy more tricky.   They did laparoscopic (keyhole) surgery under general anaesthetic and managed to find a node close enough to surface to biopsy.  I has asked about removing nodes that were causing pain, but most of the large groups were lying right next to major blood vessels, so couldn't be touched.  I had a night in HDU to recover but coped fine with the anaesthetic itself and the wounds are healing well.    I have been back home for nearly a week now and just got the results a few days ago - much quicker than expected.

Treatment

The initial treatment of all PTLD is to reduce anti rejection drugs, in an effort to allow my own immune system to get some control.  One of my drugs (MMF) was stopped right after the scan and my other one (tacrolimus) is being reduced to the minimum level - so I had some more blood levels taken today to check this.  My steroids have been increased to try and protect the lungs from rejection and trivial as it may seem, I am dreading getting the steroid moon face again.  It is going to be a really difficult balance of being able to mount an immune response against the cancer, without reactivating the rejection of my lungs.   The chronic rejection has been stable through lock down, and in general for about the past year.  My lung function is still under 1 litre, which isn't great but I am not needing oxygen and can manage what I need to do day to day.  I am absolutely terrified that my lungs start declining again, after just getting to the stage where I felt a bit more secure.   Although 2nd transplants had been discussed during my previous decline, I would not be eligible for this when I have active cancer (would be possible if cured in future). So I need to get this kicked into touch without affecting my lungs.

Beyond initial treatment I am now awaiting communication from the Beatson.  Treatment might involve an antibody drug that would act to "mark" the affected cells for my immune system to nuke, or it might be more formal chemotherapy, or combination of both.  I will update my blog once I know myself.

The future

At the moment I am just getting my head around the diagnosis.  The Beatson are aware of me and I expect to hear this week if I need any more staging scans, or whether I will be meeting oncologist first.  Newcastle have been in communication and they are happy for Beatson to take the lead, and they will liaise as required.  I've to monitor lung function twice weekly on my home monitor.  My GP is now looking after my pain meds.  I had a real struggle getting on top of the pain in hospital and barely slept - I am now on higher doses of long acting opiates, with doses for breakthrough pain and another for nerve pain.   Things have been under more control the last couple of days and I have slept a bit better, so hopefully I can settle into a routine now.  It's impossible to comment on prognosis - there aren't clear factors that determine if I will be a responder to treatment, how my lungs will cope and how likely we are to achieve remission.   My aim of course is to be cured asap with no loss of lung function - aim high!

I will update when I have more information about the next steps!

LOCKDOWN DAY126

Hard to believe so much time has passed since my last blog!  We are now well into the school holidays, although it doesn't feel very different to the last few months.  Estelle has now officially finished P1 and ready to start P2 in only a few weeks!  I suspect the schools are likely to go back full time if the covid numbers stay low, but if not, they have a contingency of attending part time in bubbles.   I'm not sure which I would prefer to be honest.   I know I will be incredibly anxious about her returning and mixing with others, but she also desperately needs the social contact and routine.  She is excited but also very nervous - having not been at school for so long has been tough.

From a shielding perspective there have been some changes over the past month.  On 18th June they announced that shielding people could at last leave the house for a walk!  So it has been great to be able to take Dexter with Estelle -although we are only going round our own streets, as I am still avoiding anywhere crowded.   From the 20th June we have been allowed visitors to the garden (not indoors) with social distancing - I've been able to see mum and dad outside, but strange not being able to hug them!  I also got to see my bestie today for first time since lockdown!   From 10th July they announced children of those shielding can mix with other children under 12, if outside.   Estelle was therefore able to see her wee pal Joseph and his sister Holly (as they hadn't been seeing other people) - she was so happy to have someone to play with, after nearly 4 months with just us.   It's a tricky situation though as I still feel very anxious about having contact with anyone who might be inadvertently carrying the virus so she hasn't had any school friends to visit or been to anyone elses garden.

As restrictions start to ease, I must admit I am feeling increasingly anxious.  Although numbers in Scotland are low just now, the virus is still out there.   And its just as dangerous for me to get it as it was back in March when we locked down!   My lung function seems to be stable, but it's low, so I can't afford to have a further drop.  I do worry as things start to normalise that other people will become more lax and numbers might rise again.    It's fine for the government to ease shielding restrictions (and perhaps even pause it in august) but it doesn't really make me feel less worried.  For me to stay safe, I am relying on other people to help keep me safe.  I am relying on other people to follow social distancing and not spread the virus, and I'm relying on other people to follow rules and guidelines.  I was really glad when they made masks compulsory in shops.  I haven't been in a single shop since lockdown, but at least if I needed to, I would be safer.  I can wear a mask but transmission to me is only reduced significantly if the other person is wearing one too.   It's frustrating when people complain about having to wear them - it's just something we have to do if we want life to ever get back to normal.   I know people will argue that people should have a right to choose not to wear one or the right to ignore social distancing "i'll take the risk of getting covid"  - but it's not about the risk to that person, it's about the risks to those around them.  Not following rules then removes the choice for people shielding, who can only rejoin society if everyone works for the greater good.  I think I might be sounding a bit preachy, but it's hard being stuck in this situation where I wonder if it will ever feel safe again. 

On the upside, numbers are down in Scotland and we are making headway.  I am lucky to have been able to stay safe, with my wee family.  I have got food orders no problem, prescriptions delivered and the luxury of Andrew being able to work from home.   I've been busy with Estelle but also managed to fit in a few wee craft projects to keep me sane.  And of course I have the joyful Dexter to give me big fluffy cuddles every day :-)

Hopefully by the next time I blog, the numbers will be even lower, school will be back and maybe life will feel a bit more normal!

LOCK DOWN - DAY 69

It's hard to believe more than a month has passed since I last blogged.   Obviously we are still shielding - not leaving the house, and getting all our food delivered.   I was reading Scotland's plan for exiting lockdown, although currently this doesn't apply to those shielding.  The government will release new guidelines for shielding before 18th June, so will be interesting to see what these might be.  I imagine it wont be possible to ease the shielding measures until track and trace is fully working.

I had a phone appointment with Newcastle and they did ask for bloods to be done - so had to visit GP for these.  It's quite sad that this is the most exciting thing that's happened in the last 69 days and was  like a wee trip out haha.   I had to wait in my car, until a nurse with full PPE came and gave me mask, and took me in side entrance - where she promptly took the bloods and I went straight back to the car.  It was totally surreal.   It must be so strange for the staff having to work like this.  Thankfully I seem to be stable, but obviously not had lung function checked.  I have had some random borderline fevers and was feeling bit run down, but reassuringly oxygen levels were fine on my home oxygen saturation monitor, and bloods were normal. 

Poor Estelle however has not been well.  She was having borderline fevers but had no other symptoms, other than being very irritable and upset (which to be honest, I thought was just effects of lockdown).  It seemed to be getting worse and we spoke to the GP.  As she had a fever, she couldn't be seen in the GP practice but had to go to a local covid hub.  Andrew took her, and again,  it was a surreal experience.  They had to wait in car to be handed masks, then wait at a marker outside building, before being allowed in.  Everyone was in gowns, visors, masks - and I think it was an unnerving experience for Estelle.  She knows about coronavirus and understood the reason for masks - but she later said that because of the gowns, she was worried they were going to do an operation there and then!   Anyway, they found she had a perforated eardrum, so she got antibiotics for presumed ear infection.  I spoke with GP again at the start of this week as she still had a fever after the antibiotics, and they checked urine, which was clear.   Towards to end of this week she has seemed overall better and temperature been more stable.  Hopefully we are getting to end of whatever has been going on!  At times I did worry about Covid - but even at Covid hub, there was no community testing anyway.  I think the rules have just changed to allow people to request tests, but it's too far down the line.  I also think that if it had been Covid, then I would definitely be unwell by now!!    It's a shame that she had to contend with feeling rubbish for so long, on top of the situation of missing friends and family.

Overall I think we have a reasonable routine - although minimal school work being done!  I think the longer they are away from school, the less relevant it feels for them having to do schoolwork.  The school are good at putting up timetables of weekly activities but realise that it's not practical for children to complete everything suggested.   We try to do a mixture, with plenty of garden playtime for sanity. 

I find it hard not having much free time, as sometimes you just need space to think.  I am sure everyone is feeling like this just now!  I am also feeling a bit anxious about how things will work out - at the moment there doesn't feel as if there is much to look forward to and I wonder when we will start to feel safe again.  At least we are safe at home and it's a luxury to be able to do this, so I can't really complain.   It's also amazing how much time has already passed - if we get some good summer weather then I am sure that will also help! 

Love to everyone - stay safe x

Lock-down... Day 35

It's now been 35 days since we started "shielding" as a family - which means 35 days since we even left the garden.  Shielding means you can't even do the "daily walk/exercise" permitted and can't go to shops even for essentials.   We are so lucky to have a garden....but I must admit its been really hard!

Food wise, we have managed with local delivery of fruit and veg boxes, milk deliveries and some basic food boxes - and last week managed to get an online order and have another booked.  Although I'm on the shielding list and have replied to government message about needing online shopping, we still haven't been allocated priority slots by supermarkets.  Some of my CF/transplant friends heard last week but many haven't....it's all a bit random!!  Sainsbury emailed Andrew the other day, as it had identified someone in our house was vulnerable so we now have that as an option.  I haven't been worried about food though, as I know my friends and family would help if needed!

Sanity wise, it's another issue haha.  Home schooling is a rollercoaster of a ride.  The novelty has worn off for Estelle, she is fed up not seeing her friends and it's hard going a lot of the time.   I am literally only doing some reading and numbers for short periods but keeping her amused for a full day can be difficult.  We watch the science centre experiment, make crafts, do colouring, play outside a lot - and it's pretty full on.  I know people will tell me to allow her to watch the ipad/a movie, but believe me, I am not stopping her!  Estelle is really active and doesn't tend to sit for long - she would spend all day outside if she could!  Only problem with this, is that I need to be outside with her - understandably in the current situation she is not keen to be left alone at all.   It must be really anxiety provoking for children - old enough to understand something serious is going on, but young enough to not really fully grasp the situation.   Of course, this has had a knock on effect on bedtime - Estelle wasn't a good sleeper even as a baby, and at the moment she is finding it hard to get to sleep.  We are using stories and some mindfulness which is helpful, but I guess the upshot is that we don't have much of an evening.   However I know it's not forever and all we can do just now is try our best to work through this as a family.

I am not getting much time to myself, but have done a bit more felting, which is quite relaxing.  I have been keeping a journal of things we do together so that Estelle can have this when she is older.  Although it's hard having a young child at home all the time, it is keeping me busy and I'll find it very strange when she eventually goes back to school!

I am missing seeing my family and friends and we are only 1 month into minimum of 3 months shielding ( I can see this being extended) but I have been keeping in touch with facetime, whatsapp and waving through windows haha.

For all my moans about life in lockdown, we are at least all safe and well at home.  My health seems to be stable just now (I had a CF review over the phone) and that's all I can ask for.  I am lucky not be to working on the front line and am full of admiration for my friends who work in the NHS and are out there, putting themselves at risk.....much love to you all xxx

Isolation

I haven't blogged since January, as I had missed by February Newcastle appointment due to snow storms preventing us travelling.  It was rescheduled for 10th March.....just at the start of the worries about Covid-19.  At that time the team were advising us not to use public transport, but clinics were still running.  We decided on balance it was best to go at that point, as I knew the situation was going to get worse and I needed to be reviewed for the study.   I felt so paranoid at clinic - lots of hand washing and alco-gelling and avoiding as many people as I could!  Andrew was cycling to work to avoid the train, but Estelle was still in school, so we weren't really protected from the virus. Fortunately, the appointment showed a stable lung function and they were happy to give me 2-3 months reprieve.   Which was just as well, given the current situation.

The week after Andrew decided to start working from home to reduce the risk of bringing home the virus, and the Monday before the schools officially closed, I decided to take Estelle out of school.  The following day the government announced the most at risk groups.....and the special group of extremely high risk who would need to be "shielded".  Of course organ transplants (and Cystic Fibrosis) fall into the extremely high risk group requiring to be shielded.  The immunosuppression medication we take to prevent rejection of the organ increases risk of infection.  Unfortunately having chronic rejection puts me at even higher risk - this process was likely kick started by a viral infection originally and I have only just achieved some stability.  My lung function is not great (0.9litres/ mid 30s%) so I don't have any reserve to lose and it this Covid-19 could be catastrophic. 

So what does this shielding mean?  I'm expecting a letter any day now, which is to tell me I have to stay inside (no walks, not allowed to go to shops...nothing) for a minimum of 12 weeks.  The idea is to protect me from the peak of Covid-19.  Obviously I'm not waiting on the letter to heed this advice and I haven't left the house since Estelle stopped going to school nearly 2 weeks ago.  I am allowed in the garden.....and I am so grateful we have a fairly big garden and lots of sunshine last week!  

Although the rules state that Estelle and Andrew could socially isolate - so basically stay indoors as much as possible but be allowed to go to shop for food and walk once a day - this would mean I had to still stay 2 metres from them at all times to protect myself!!  I would need to basically isolate in a room.  Given that Estelle comes into my bed during the night (every night!), and I need to be there to do the home schooling/child care, while Andrew works from home....then this would be near impossible!  We are therefore all 'shielding' so to speak - all staying at home, only going in garden and relying on help to get our food etc.   We were fortunate to be well stocked up before the lock down (Andrew is very organised!), we already got milk delivered and managed to get a nice fresh fruit box delivered.  Estelle eats fruit like a fiend!!  My dad drove 50mins to leave bags of food on our doorstep, my friend collected prescriptions for me, another friend arranged to collect Estelle's school work and leave at the door.   My best friend has offered to bring me anything I need (another 50min drive) and my cousin keeps offering me her supplies! Friends and family are amazing!!  However I then do worry about putting other people at risk, especially my parents who still think they are young!!!

So far, we are coping well.  Estelle enjoyed the first week of home schooling with mummy - the novelty of one-to-one undivided attention!  I am saying home schooling, but we just do a couple of her worksheets in the morning, then do a mixture of activities - in my mind, everything is learning!  We have been enjoying looking at the webcams for various zoos and aquariums, watching the science centre daily experiments online, reading stories, baking, doing yoga and P.E lessons on youtube and lots of crafting.  We are making an underwater scene just now...lots of fun!  Of course there is also plenty of netflix and CBBC for downtime.

Estelle has adjusted remarkably well.  She had a difficult start to the 2nd week when she realised she really wasn't going back to school, so we had a pretty relaxed day and lots of hugs.  We can't go on our planned holiday to Center Parcs at Easter, but she is making plans for what she can do when we are able to go.  Last night she lay awake for 2 hrs, unable to sleep, as she was missing her friends.  It breaks my heart.  However she woke again today with a smile on her face and has spent most of the day in the garden - getting Andrew to play various games.  She learned to ride her bike last weekend without stabilisers, which has given her something to focus on.  She really is a very positive and incredibly resilient wee girl.  She makes me very proud!

For myself, it's a strange situation .  I've not been at work for so long, that being at home and slightly isolated is not a new experience.  In fact, given the number of illnesses/hospital admissions in the past, I am used to periods of social isolation and have never found it hard to keep myself amused.  What I am finding hard though, is suddenly losing all my down time!  I see people posting about taking this opportunity to read, watch netflix, take up hobbies etc.   Instead I have found myself thrown into role of full time child care - for a 5 year old who doesn't really sit still or stop for more than 10 minutes.  Andrew is at home, but working all day (of course he helps on evenings and weekends)  Although I am exhausted, I do feel that Estelle is benefiting from this time together.  I am taking it as an opportunity for connecting, growing and learning together and enjoying each others company.  It wouldn't surprise me if she looked back on this time as quite an adventure!

In the middle of all this crazy new life, we have Dexter.  I am thankful everyday that he joined our family when he did!  It is impossible not to smile when he comes racing to you, wagging his tail frantically.....which he does on a regular basis.  He is one of the happiest wee dogs I've ever met and he is so cuddly.  He is bringing such joy at a time when it can be hard to see beyond the negative news I am seeing daily - he reminds us all about living in the moment!  He spends half his day watching from the window, and is quite confused why there isn't many people to see just now!  He loves Estelle and I think this does help her feel as if she does have a friend with her.

In the meantime, thank goodness for text, whatsapp, phone calls and facetime!  Now we have access to so many ways to communicate with others and stay connected.... we are never truly isolated.

Happy new year!

2019 has been a year of ups and downs. I started it with great hope that radiotherapy would halt the rejection, but there was much disappointment in the first half of the year as lung function kept falling. I honestly wasn't sure I was going to still be here for 2020.  Then we had a wee miracle in the summer when my lung function seemed to stabilise.... And now had 4 months with no drop at all.  Whether it is related to the drug trial I started in February or just the natural course of rejection, which often stabilises at lower levels, I don't care.... As long as it stays where it is for a good long while!!

Despite the health issues we also had some amazing holidays. A lovely family trip to Majorca, a week with friends in center parcs and myself and Andrew had a great weekend in a treehouse for my 40th!! Both myself and Andrew celebrated 40th birthdays and 20 years together!

Estelle also had a big year... Leaving nursery and starting school. She is doing really well and we are so proud of her!

I made the big decision about not returning to work and this was hard to come to terms with, but will hopefully lend stability and less anxiety in this new year! It will allow me to focus on family without neglecting myself.

The lowest point of the year has not been health, but the loss of my best bud Seb.  Another blog still to follow about my wee boy. I will never stop missing him and his cute wee furry face.  I am so looking forward to Dexter coming though.... And the fact he's related to Seb is a big comfort.  It will be great fun getting to know his personality and quirks, and I have a feeling he'll be the highlight of my year!

So here's to a year of stability, good family fun, Estelle continuing to flourish and to furry friends 🥰

Stable Health

Apologies for not updating sooner - I've had 2 Newcastle visits since I posted in September, but have been somewhat distracted and keep forgetting to post.

The good news is that both October and November visits showed the same lung function (around 35%), so that makes 4 months now with similar results.   Makes a nice change from the monthly drop I had before then.   I am feeling the lower function when I'm walking, trying to climb stairs etc but am lucky that it seems to have stabilised at a level where my oxygen levels are ok - so I am not needing any additional oxygen.  This is a huge benefit!  I'm also getting used to this level and knowing what I can and cannot do, which makes it a bit easier to plan and pace myself.   I have no idea at all how long it might stay at this level, and neither do the doctors.  The main aim is to avoid infection, which might set things off again.  It's hard to avoid all the viruses going about but I'm doing not too badly so far this year.

With regards to learning to cope at this current level and get the most out of life - and give the most to Estelle - I have come to the difficult decision not to return to work.  I had been off for a year past September - intially only going off short term for the radiotherapy, but then being unable to return as lung function continued to fall.  It's been a really difficult time making this decision and I've been weighing up options for months in my mind - going over and over the pros and cons.  It was finally a helpful discussion with Occupational health that crystallised my thinking - he spoke about risking the stability by trying to force a return to work, and I actually felt relief that someone was saying it would be ok not to go back.   Don't get me wrong - I love my work and it's a huge part of my identity - but more importantly I am a mum.  I need to be here for Estelle as long as I possibly can, and I owe it to her to look after myself as best I possibly can.  I also owe it to myself to give myself a break and to stop feeling like I have to prove myself worthy somehow.    I made this decision about 6 weeks ago, and although I cried for a week, felt anxious and experienced a great sense of loss,  I also gradually came to terms with where I am at the moment and what it most important in my life.    It doesn't mean that all doors are closed and if I remain in this semi-stable state, then I could consider some other medical interests to keep my mind active.   I don't really think I will be short of things to do!  So far its allowed me to go to every event at Estelle's school and she absolutely loves that :-)

The other reason I have not posted over the past month, is that we sadly lost my wee dog Seb on the 3rd December.  He became unwell with acute pancreatitis about 3 weeks before and it was a turbulent period full of ups and downs as we tried desperately to get him back on an even keel, with lots of admissions to the vets for treatment.  He actually did recover from his pancreas but the whole episode knocked his kidneys off further, which have been very poor for the past few years....the vet said it was remarkable his kidneys had actually coped this long.  He was 15 yrs and 2 months - to be honest, whatever age he lived to was never going to be enough for me.  He was my best wee bud and he was with me through my many life events over the past 15 years.   I loved him more than I thought it was ever possible to love a dog and am completely devastated.  I feel very lost without him.  I used to say to Andrew when we met (and I thought I would never have children) that all I ever wanted was a puppy dog to love me.  And I certainly got that and more.   I will dedicate a post to Seb and his antics, funny ways and total attitude, when I feel more ready to look back.  There are many stories!

In spite of the stresses of recent times, I am still enjoying the run up to Christmas with Estelle and Andrew.  Estelle is just the perfect age for enjoying the magic of this season and hopefully, like me, will never outgrow it.  We have been to see Santa in his woodland cabin, had a day in Glasgow looking at the lights and markets, saw the real Cairngom reindeer that came to our town, pulling Santas sleigh, had two school Christmas parties and tonight we saw the local pantomime.  I still have Estelle's nativity to look forward to - she tells me she is an Angel because there was no way she was being a sheep haha.    Only 10 sleeps until Christmas!

Update

I've had a couple of Newcastle visits since my last blog.   The end of the first 6 months of the study was last month.   That appointment did confirm the Glasgow result, which had been a slight drop from July.   However reassuringly yesterdays result was the same as August, so there hasn't been another drop in the past month.

At the last appointment I was put onto the active drug - having been taking either the drug or placebo for the past 6 months.  Even the doctors don't know what I was on.   However I had to go back to the starting dose and retitrate again.  On the lowest dose, the nausea and fatigue were so much better, then when I went to the middle dose the nausea came back, and on the high dose the fatigue also became extreme again.  It's so overwhelming - a couple hours after taking the tablets I'm ready to go to sleep and feel awful!  The meds are three times a day, so this isn't ideal.   It does confirm to me that I have been on the active drug all along, as the side effects are identical to what I've been experiencing over the past 6 months. 

At yesterdays review we discussed these difficulties.  The doctor felt that overall my lung function has been more stable in the last 6 months.  It has still slowly drifted down but SO much slower than the previous 18 months and some months there hasn't been a drop.   There are a potentially a few reasons for this - it could be the trial drug, it could be late effect from radiotherapy and it could simply be the natural history of chronic rejection, which tends to become more stable at low lung functions under 1litre.   Given that it might not be the drug that is helping and the fact the side effects are impairing me more than my low lung function, we have decided to reduce the dose for this month and see how I get on.   I am anxious about any negative impact on my lung function but I am also really struggling with the nausea and fatigue, and spending a lot of time feeling quite rubbish.  I was determined to tolerate this for the past 6 months but it does start to really wear you down!  They have only had 2 other patients on the drug and neither of them could tolerate taking it.  I need my energy for Estelle and for just living life, so think this is worth exploring.

I'll be back down in another month, so keeping my fingers crossed that I'm coping better with the side effects at this stage, but without any negative impact on my lung function.  Onwards!

No news, is no news!

I'm aware I haven't updated the blog for ages!  I forgot to do it after my last visit and then time just ticked on.   My last newcastle visit was in June and showed no drop in lung function at that time - so that was 2 results the same, and the month before was very similar.  I was feeling cautiously optimistic that we might be reaching some stability!

Instead of travelling to Newcastle for the July visit, I had lung function checked locally.  Unfortunately this showed a drop in lung function from 0.97 to 0.89l (35%).   However in the past I have noticed variability between Glasgow and Newcastle results, so I am very unsure if this is a real drop or not!  I almost wished we had just travelled to newcastle!   I have been feeling more breathless but also wonder how much the weather is affecting this at the moment.  I love hot weather but I'm sure it must have some effect now my lung function is lower.

My next visit to Newcastle in August is for the end of study tests....so I will get the full extended lung function testing and repeat the 6 minute walk test (this shows how far I can walk in 6 minutes and whether oxygen levels drop).   I expect it to be worse than the start of the study but really really hoping lung function is still in same range as June visit and Glasgow was reading low!  They wont tell me whether I have been on the active drug or not, but I will be started on 'open label' drug - e.g I'll know I am on the active drug.  It will have to be re-titrated, so I will know if on the lower dose I stop feeling sick!  Although there was some chat in May about not being on the drug, I really do think I am.  The sickness has been ongoing and very obvious if I take the tablets without enough food - it just seems too coincidental.  The fatigue is also ongoing but I am getting used to the lower energy levels, although find it frustrating, as it wasn't that long ago I felt able to do most things!  

Otherwise I am ok - not back at work and not sure whats happening with that until we have a clearer picture.  Estelle is great and is starting school next month - so I have plenty to focus on other than health :-)

I will update once I have my end of study results :-)