So that’s a year now since I completed my chemo for AL Amyloidosis and what a year it’s been for all of us worldwide. I started the year thinking that it would be great to be back to normal and a chance to have a good holiday and catch up with friends and family…..how wrong could I be!

It’s been a strange year for me since last October. Whilst the peripheral neuropathy improved in my legs and feet unfortunately the problems with my eyes have continued to the present day (Oct 31st) but are slowly improving with time, however this was a minor inconvenience compared to what was to happen to the world over the forthcoming months.

During the initial stages of lock down in March through to July Alistair was still working in the hospital and as I was deemed to be high risk for catching the virus, as my immunity was very low after the chemo, we had a very different home life. Ali would come home from work, immediately have a shower and put his clothes in the washer, we’d sit 6 feet apart in the house and slept in separate rooms. It was very surreal but he didn’t want to put me in danger and we were very careful about having as little contact with anyone and he did all the shopping during that period of time as I was shielding.

My appointments at the hospital for follow ups were all phone consultations. Alistair took my monthly blood samples to be sent to London for screening and my appointments for my scans and follow up in London were all cancelled. but hopefully normal service will be resumed next June. My monthly blood results have continued to improve and are now within normal range so I am officially in remission and hopefully will stay there for many years to come. So much for having some great holidays whilst my health is ok but that’s something we’ll all have to look forward to at a later date, a much later date! My kidney function is slowly starting to improve although is still a bit labile and I still have frothy wee but maybe that too will improve with more time.

Alistair retired this year and our plans are still on hold for a dinner to ‘see him off’ after 42 years with the NHS and have a good holiday to mark the occasion. My parents 60th wedding anniversary celebration dinner was also postponed but will be rescheduled for when we’re back to normal so there are some good things to look forward to.

It’s been a very trying time for the world over the last year but hopefully 2021 will bring a vaccine and some respite from this virus but in the meantime I hope you and your families stay safe and well and let’s hope we can have some kind of celebration when it comes to Christmas.

Love to you all. Axx

Well all I can say is, it’s been an eventful year, to say the least.

2019 kicked off with my first trip to see the renal physicians after finding out all was not well in my kidneys and blood. This initial visit in January started the ball rolling with so many hospital tests it’s hard to remember them all, suffice to say that I am so glad we have a National Health Service and I cannot begin to imagine how much my investigations cost! I cannot praise the service highly enough, all those who contributed to my diagnosis and care this year, it’s truly staggering and we should never underestimate the roles of all these health care workers because when they are needed they really step up to the mark.

I have seen both the Haematologists and the Renal physicians this December. The Haematologists were pleased with the result of the chemotherapy despite me having not tolerated it as well as some but we’re all different so it can’t be the same for everyone. Now I’m out the other side and still have some issues with peripheral neuropathy and problems with my eyes but I don’t have the problem with the para proteins any longer so that’s a good thing. The Renal physicians said it’s now a case of kidney preservation and let’s hope my kidney function doesn’t deteriorate any further and can now recover a bit since the amyloid which was affecting them is no longer being produced. Long may this remission last.

Now here we are at the close of the year, one I will remember for different reasons.

It proved to me that you can try and live a reasonably fit and healthy life and then suddenly, despite your efforts, something can come and knock you down when you least expect it. Call it fate, bad luck or whatever you like, it’s really grounding and made me appreciate what is truly important, namely my health but also family and friends.

It also proved that family and friends are so important. You all came out of the woodwork this year to offer support. There were lunches and dinners out, visits to the pub, quiet cups of tea in my garden room, you cried with me, laughed with me- a lot, you phoned, asked me for coffee/lunch, sent personal messages on Facebook, by email and Instagram and the cards arrived by the bucket load, some from folk I haven’t heard from in years who had read my blog or who heard from someone that I wasn’t well. Thank you all so much, you genuinely have no idea how much these meant to me and I was amazed by your generosity, I will not forget, I was truly overwhelmed by your sentiments and friendship.

So it only remains for me to wish you all a very healthy and Happy New Year. I hope it is a good one for everyone and you get to share it with your nearest and dearest.

Thanks for reading.

Anne xx

So, that’s the chemo all finished for now. I say ‘for now’ as I know this will be back but hopefully I have got many years before this happens. I spoke to the Nurse liaison officer at the NAC about how long this is likely to last and he mentioned that some patients are getting an average of 7 years before a recurrence and also an article published in the ‘Blood’ journal, states, ‘the efficacy of Velcade (Bortezomib) has a 7 year remission in 55% of participating patients’, so let’s hope I’m in that 55% and for even more than 7 years before it rears its ugly head again.

Alistair and I went on holiday last week up to Callendar and had a lovely week with various members of the family joining us for parts of the week. I managed a few bike rides, not least a 26 mile ride from Callendar to Stathyre and back which started off in lovely weather but progressed to really cold wet conditions heading into Strathyre, where there just happened to be a lovely cafe, which was very warm and did lovely coffee and scones with clotted cream. We managed to get warm and set off back home but the peripheral neuropathy in my feet meant that my toes became completely numb on the way home which was surprisingly incredibly painfully and made the last few miles cycling quite unpleasant. Once we got back it took a long time to warm up but other than my feet the rest of my body coped with the exercise and I’m reassured that I’ll be able to get fit again. It’s now 10 days since my last chemo session and I’m starting to feel almost normal…. the pains and burning in my legs and feet are regressing and I’m beginning to come out of the chemo fog. I’ve still to see the consultants for a final chat about what happens next but in the meantime my life will carry on and I’ll try and get fitter and lose some of the steroid puffiness and extra weight I’ve gained from eating what I want and not exercising. I can’t totally blame the steroids.

One of the lasting side effects of the treatment however which is most distressing is I have gone off Champagne and Prosecco!!!! I’m hoping this is merely a change in taste buds but so far I’m not convinced. Gin and tonic has taken over as the drink of choice at the moment but it’s not quite the same and the toast to my finishing treatment was a mouthful and I didn’t enjoy it at all but maybe, as with all of this, time will tell if things improve.

Well here I am now starting the final cycle of chemotherapy. It suddenly seems to have crept up and now the end is in sight. I can’t say that it’s been as tolerable as I was led to believe but although bad at times it’s not been totally unbearable.

I saw the Haematology consultant last week to discuss the final cycle of chemo. I have been having muscle pains and burning feet which suggests I may have some peripheral neuropathy, (this refers to the conditions that result when nerves that carry messages to and from the brain and spinal cord from and to the rest of the body are damaged or diseased) so the doctor suggested a reduced dose of Bortezomib to see if this prevents things getting worse. My first dose of this cycle was last Friday and since then I’ve been ok and the burning feet have not got any worse and the muscle pains are less severe so let’s hope this is as bad as it gets this cycle. I’m keen to get back to some form of exercise so I’m hoping the neuropathy doesn’t get any worse.

I got my blood results back from the NAC this week and thankfully there is no evidence of any more para proteins and I have had 100% response to the chemo which is such great news and makes it all worth it. I’ll have to see what the Haematologists suggest now in terms of follow up and will fill you in once I’ve seen them. I’ve got a lot of questions.

This first week has been OK generally and I had another chemo session yesterday on 11th Oct but as I was feeling good today (Sat 12/10/19) I decided to try some running so had a slow run/walk to the new Park Run at Queens Park(the trial week for the main event next week) followed by a couple of run/walk laps on the Park Run, (I will do all 3 laps next time Laura- I promise), then I had a slow jog/walk home and followed this all with a dog walk. I feel great, totally energised and motivated to get back out there properly once the chemo is totally over. It was lovely to see some of the Bellahouston Harriers today out on the new course today and thanks to all of them for all their kind words, hugs and chat, you’re the reason I’ll be trying to get back to fitness so I can join you all again xx.

So things are looking up and I’m feeling relieved. Alistair and I off for our week ‘oop north’ next Saturday and I’m really looking forward to it. The family are joining us throughout the week at various stages and I’m looking forward to some cycling, maybe a bit of happy jogging , log fires, autumnal trees and generally chilling out. I have lots of gin and Prosecco too so if you find yourself near Callander next week and fancy calling in please give me a call xx .

So here I am nearing the end of the third cycle and generally speaking it has been more tolerable, although not without it’s problems. My sore eyes gradually improved after seeing the Ophthalmologist and being prescribed Doxycycline (antibiotics) to take for 6 weeks which should coincide with the time I finish all the chemo.

Cycle 3 has also brought with it intense lower leg muscle pain, similar to pain I have felt after running a half marathon. The front of my shins have been so sore but this can be managed with paracetamol so at least it’s not been too bad. On the plus side, the days I have my Dexamethasone have been so productive that I have nearly finished clearing out my office, (18 years worth of designs, samples and drawing equipment), which has been time consuming as I keep being side tracked by remembering how long each design took to produce! I’ve now decided not to go through it all but just bin everything and it’s very cathartic to see the bags piling up ready for the shredder and I’m looking forward to returning the office back into a bedroom once more.

I haven’t been able to exercise at all this cycle other than walk the dogs due to the muscle pains but if I get any respite I will try and get out for some short runs and try and build up my stamina again. I have been out for so many coffees and lunches that I’ve put on a lot of weight (I can’t blame the steroids entirely), so the house is going to become a cake /biscuit/sugar free zone soon otherwise I’ll need bariatric surgery once this has all finished.

My last dose of chemo this cycle is this Friday 20.09.19 and then I have 2 weeks off before the final round starts. I remember the Haematologists saying that they would evaluate the treatment after the third cycle but I haven’t heard anything from them yet as to whether I will have the final cycle or not but assume so unless I hear otherwise. The blood results from the NAC show undetectable levels of Para proteins in my blood and 100% response rate to the chemo so I’m optimistic that I will be in remission at the end of this – long may it last.

Well, where do I start to describe the last few weeks? The Haematologist told me at the start of my chemo that this regime was generally well tolerated and I was optimistic that I’d get through this without too many problems. I should have been more wary. Having overcome the issues with my guts I thought I’d be able to enjoy my ‘week off chemo’ only to be knocked back by yet another side effect, this time affecting my eyes.

It started with a general feeling of grittiness in my eyes, then soreness followed by styes in both eyes. Here’s the ‘sciencey’ bit…..Apparently, the Bortezomib causes the tears in your eyes to become more viscous and therefore they tend to get trapped in the Meibomian glands, which are little glands running along both the top and bottom of your eyelids, which then become infected and extremely sore. After several days of pain, weeping eyes (not caused by me crying this time) and blurred vision the doctor prescribed Chloramphenicol eye drops which didn’t help at all and after another few days of wanting to scratch my eyes out I was prescribed Flucloxacillin tablets. I’d been using a heated eye mask as I had one for dry eyes and was massaging the eyelids as suggested on Dr Google but I can’t begin to tell you how painful this was and my eyes were so swollen one night that I couldn’t actually close them to go to sleep. Anyway, several days after starting the Flucloxacillin I saw an Optometrist who diagnosed Meibomian Gland Dysfunction (MGD) caused by the chemo, she stopped the Chloramphenicol and prescribed Ketotifen (anti inflammatory) eye drops, Hyloforte eye drops (artificial tears) and cleaning with special wipes which all seem to be helping but I’ve also to see an Ophthalmologist on Friday to see if I need further treatment through the cycle 3 of the chemo.

I was due to start Cycle 3 last Fri 23rd Aug but due to my infected eyes the doctors thought a week off may not be a bad idea and decided to postpone this until the 30th Aug. In addition to postponing the cycle they’ve decide that once a week might be more tolerable for me than twice which would be fine except that I’d booked a holiday ‘oop north’ for two weeks after my supposed last dose but due to the changes this last dose now falls in that week away. I will be able to reschedule this for the following Monday so it should be ok except I’ll still be on my other medications that week which often knock me for six, so may affect what I’ll be able to do in terms of exercise that week but, at the end of the day, it’s about getting better and not whether I can walk a hill or cycle 20 miles.

So I’m sorry if this blog has been a bit miserable but that’s how I’ve been feeling the last two weeks. My eyes are slowly improving and with that my mood and I’m a bit more prepared for the next cycle, armed with enough laxatives to move half of Glasgow and instructions for how to manage the eye problems. Both these complications are apparently rare – trust me to get something unusual. So what will Cycle 3 bring? Suggestions on a post card…!Hopefully nothing more and I can get through the rest relatively easily. Thanks again to Alistair who has to deal with my moans and groans and manages to be sympathetic most of the time – he really deserves a medal and lots of red wine. Please join me for the next blog if I haven’t put you all off with my tales of woe this time. I suppose it was never going to be easy….xx

I started cycle 2 of the chemo thinking that whilst there were a few challenges in the first cycle I’d be able to ride them out like last time and just cope. How wrong I was.

This blog is a little less chirpy than previously – sorry for that in advance and whilst I do generally have a very positive nature I have been struggling with the side effects of the treatment this time. The GI issues which were a problem throughout cycle 1 came back with a vengeance and my abdomen swelled so much I couldn’t lie down and was quite breathless and ended up visiting the Haematology unit and being given various laxatives, enemas and eventually bowel prep in a bid to bring me some relief. The combination of Dexamethasone and Bortezomib had caused my bowel to stop completely and 12 days of no toilet activity was excruciating. Now I’m feeling a little better (and lighter) I’m certainly a little less enthusiastic about repeating this again next week. I think there’s a conversation to be had with the ‘team’ about how this is managed for the next cycle and some talk of reducing the frequency of my chemo and the dose of Dexamethosone but I’m keen to carry on with the current regime as much as possible so it’s over sooner rather than later.

On a very positive note I got a call from the National Amyloid Centre (NAC) in London to say that my first blood sample, which I sent down at the start of the second chemo cycle, had shown my bloods to be within the normal range after just one treatment which is great news and bodes well for the future. There will still be a bit of a dilemma once/if I’m in remission about whether or not to have the Stem Cell Transplant sooner rather than later but I’m sure the NAC will be able to give advice on that.

So that’s all for now – sorry to my running pals for not being able to make the marshalling the other night but I couldn’t walk let alone cheer you all on. I’ll come to the next one all being well. Thanks too to my lovely sister Kate who came to stay for the week and kept me sane, did the ironing, walked the dogs and even did some baking (wonders never cease). She bakes a great cheese scone and I see today that she’s branched out into baking flapjacks too. We’ll get her on ‘Bake Off’ yet 🙂

It’s certainly been an emotional roller coaster over the last 3 weeks and my first cycle of chemo. The GI issues continued although I think I’m beginning to get that sorted and hope it will be less of an issue for cycle 2.

I’ve been on and off Dexamethasone for the first 2 weeks, have had massive highs and crashing lows but it’s manageable. I am having to learn to accept that I can’t walk as fast, exercise as regularly or do as much as I used to and try and cut myself some slack. The dogs have still had their daily walk although sometimes more slowly and many times I’ve no enthusiasm but I force myself to go and generally feel better for making the effort.

Psychologically I think I’ve come to terms with what’s happening and have adopted a very pragmatic stance, at least externally. There’s nothing I can do other than follow the guidance of the medical staff and take my medications to try and manage this disease. I look around the chemo room when I’m in for treatment and see that I’m significantly fitter and better off than many around me and for that I’m so grateful. It doesn’t alter the fact that in the wee small hours when I’m unable to sleep, (another side effect of the Bortezomib although I’m an insomniac anyway), morbid thoughts do creep in and I have had a couple of occasions where I’ve found myself weeping uncontrollably, for no apparent reason other than I’m feeling sorry for myself. It’s understandable I suppose when confronted with your own mortality although nobody really wants to have to deal with it and look it in the eye. There is no psychological support at the hospital, not that I’ve asked for any, but none has been offered. Nobody at the hospital has asked, ‘how are you feeling about all this?’ I’ve had my support from family and friends but I do wonder if this should be more available or at least offered when diagnosed with a significant disease. I’ll just get on with it, do as much as I can whilst I feel well and not dwell too much about what ifs and drink Prosecco when I feel ok ;).

Cycle 2 starts tomorrow and I’ve kept a chart of how I felt each day through Cycle 1. It will be interesting to see if it follows the same pattern or not. Thanks to Alistair my husband who gets the daily blow by blow account of the side effects and is so supportive…..just have another glass of red wine Ali you deserve it and I’m sorry if you’re living with an impostor. Like Arnie Schwarzenegger, I will be back, I’m just not sure how long it’ll take….. xx

Well, one down and 11 to go and it’s been an interesting week. If you’d rather not read the next bit of the blog it’s fine as I will be revealing some of the less pleasant side effects of the chemo but not dwelling on them too much.

I had relatively few side effects from the medication until Tuesday when my stomach became very distended and uncomfortable. The GI issues have started now and I’ve gone from chronic constipation to sitting on the loo all last night – I was warned and am not surprised although I’m absolutely shattered this morning after no sleep and no Dexamethosone today to perk me up either. I think ‘chemo brain’, (a well known phenomenon for those on chemo where you have thinking and memory problems) has definitely kicked in and I’m having bizarre feelings of not quite being here and feeling very detached from reality but this may in part be down to lack of sleep last night. I don’t feel fit to drive today and will limit myself to a long dog walk and just chill for the rest of the day.

Back to the hospital for the injection tomorrow and my next dose of Cyclophosphamide is due too. I’m already noticing changes to my hair texture although it’s not getting thinner just yet but I’m sure that will happen. On a very positive note regarding the steroids, I’ve had a frozen shoulder for the last 6 months which has been incredibly sore but has now completely gone thanks to the Dexamethasone so that’s been a bonus. I must say I feel a lot better on the days that I’m taking the steroids.

I’m off to drink lots of strong coffee now and hopefully start to feel more myself in the next few hours. More chemo capers to follow over the next few weeks if you’re interested. Thanks again for all the ongoing support. A xx

12.07.2019

So, after a rather long wait I am here and about to start chemo. I have very mixed emotions today; pleased to be getting started, frightened about the potential side effects as I feel well otherwise but confident that this is going to work and I’ll have some remission at the end of it all. I’ll discuss the medication regime as set out by the NAC in London so if you want to skip this bit you can as it’s a bit full on!

I’ve to have some blood tests before I get the chemo drugs; a short synacthen test to make sure my adrenal glands are working ok. This test was done before but was borderline so needed repeating. It’s an injection of a synthetic hormone and my blood is checked just before injection and 30 minutes afterwards. The cortisol levels should rise during the test to levels above 420 nmol/L indicating an adequate adrenal response.The test result came back fine so it was time to proceed with chemo.

The pharmacy had a delay in sending up the medication but during my wait I was plied with tea and sandwiches and a very welcome offer of a reflexology foot massage courtesy of Lisa from the Beatson Cancer Charity. She also mentioned their wig service but I’m not quite sure yet if my hair will fall out so I’ll not dwell on that until I have to. The charity support all patients and their families dealing with a cancer diagnosis and whilst I don’t have cancer they do support any patients going through chemotherapy. They cover the Beatson Unit in Glasgow, The QUEH, the New Victoria Hospital (where I am receiving treatment) and The Beatson Unit in Lanarkshire. Complimentary therapies are just one of the many services they offer and more information can be found on their website https://www.beatsoncancercharity.org/about-us/services

It was lovely to have a bit of pampering in a clinical environment and it really was very relaxing. Do you think this could could be roled out to dentist waiting rooms too? 🙂

I received my schedule of medications and realised I’d have to write a spread sheet to get the days and medications right as its a fairly long list of medication. My chemo consists of three main drugs, Bortezimib, Cyclophosphamide and Dexamethasone and additional drugs to help alleviate side effects, namely Metoclopramide to help with sickness, Allopurinol for possible gout, Aciclovir to prevent shingles, Omeprazole to prevent stomach ulcers due to high doses of steroids plus the Rosvastatin, Ezetimibe and Aspirin I already take for the high cholesterol. A total of 27 tablets some days plus the injection of Bortezomib twice a week and Cyclophosphamide once a week. This will be done for a three week period and this will constitute a cycle and I have to have a minimum of 4 cycles but maybe up to 6. So 12 weeks minimum which takes me til the end of first week in Oct – not that I’m counting of course!

I’d always though of chemotherapy as being hooked up to a drip for hours as these medications were given intravenously, but in my case it’s only one sub cutaneous (under the skin) injection of Bortezomib in my upper arm and the rest is tablets. Having had the Bortezomib and given a bag full of medication I was free to go. So that’s Day 1 and the beginning of my chemo journey.

14.07.2019

Here I am now, a few days into the treatment and although it’s early days I feel ok. The Dexamethasone has meant I have hardly slept (a total of 5 hours in the last two nights) but the house has never been so clean, the ironing up to date and the fridge stocked with food. I don’t feel manic or tired despite the lack of sleep but I’m sure it will begin to take its tole as the weeks progress and maybe more side effects will appear. I will just take each day as it comes and know that it’s all for a good reason. I haven’t had any signs of peripheral neuropathy or sickness yet so I’m relieved on both counts but better not count my chickens.

I’m sure the next 12 weeks will feel like a long time so am trying to find lots of things to do, like having lunch and coffees with friends, walking the dogs and trying to remain sociable as long as I feel ok. I have had the most tremendous support from family and friends so far and it’s been fantastic to receive messages daily giving me encouragement and good wishes and it’s been very humbling and emotional to know so many are thinking about me….thank you all so much.