I’m conscious of the fact that I haven’t posted anything for some time so thought I would put a general update on here as to how I’m doing at the moment.
Well it’s been a busy couple of weeks. Week before last I thought I’d make a surprise journey up to Manchester to see my Nan who has been ill in hospital – thankfully she’s much better now and was delighted to see me, loved the wedding photos which I was able to dazzle her with on my iPad, for 89 she is an amazing lady – as well as surprise my Mum who wasn’t expecting me either, she loved it! Was nice to be see everyone for a few days although not to be constantly rained on, comes with the territory in Manchester though! It was also on this trip that the Second Great Tattoo Adventure occurred. I enjoyed getting the train up, first time I’ve been anywhere on my own since my diagnosis and loss of driving license at the end of August, it was extremely liberating and I almost felt like I was clawing back some of my complete loss of independence.
My Mum traveled back down with me for a week of staying with us, unfortunately she seemed to bring the bloody Manchester weather with her. This has curtailed our activities a lot although we did manage a good session of wandering around the shops on Tuesday and Salisbury Cathedral today – I’ll get around to putting some pictures on here. Hopefully she’s not been too bored. It’s been lovely to have her around helping out even though I’ve not been feeling my best.
I am still waiting out for news on when my lung biopsy is going to be and how they are going to do it. I know the Chest Cancer Multi-Disciplinary Team have discussed my case and have agreed they are able to do the operation so now I just need the details. My Neuro-Oncologist Dr Geoff Sharpe is chasing them and I am to chase him again – upon his instructions! – on Tuesday. It’s a little frustrating as all of this will have knock on effects measured in the order of weeks for post-op recovery and then Chemo. We’ve tried to plan a number of things between now and Christmas such as a trip to Germany and of course Christmas itself, but I’ve a feeling we’re going to need to completely tear up the plan and start again once we find out about exactly what’s going to happen and when. Christmas if Chemo has started will probably be one spent in isolation at home due to the destruction of the immune system that the treatment causes.
I’m still regularly being asked how I am feeling by lots of well meaning people. Unfortunately answering that question a multitude of times every week by text, email and telephone is still as tiring as it has been for the last 3 months, please subscribe to updates from this Blog!!! I know that sounds harsh and I am incredibly lucky to know so many people who care so much and I am not at all ungrateful for that, but answering all the questions is genuinely adding to my exhaustion and at times, I know it may sound pathetic, making me feel very stressed out.
So, to answer the question of how am I doing, well my default position is that I feel utterly, drained and exhausted all of the time. Occasionally I have a burst of energy but I find that afterwards I am even more exhausted for hours and sometimes even days. To give an example my three day trip to Manchester wiped me out for four days afterwards and our 24 hour sailing trip a few weeks ago knocked me out for five days. I know it’s hard for people to understand but this is all a result of the drugs regime I am on which is still disturbing my sleep – I haven’t had a full nights sleep for nearly 3 months now – and makes me want to punch anyone who tells me I look tired or has the audacity or blind ignorance to ask me why I am tired! Yes I have tried everything possible, drugs from the Doc, natural remedies etc. but my Consultant tells me the sleep situation will not improve until I am on a low enough dose of Dexamethasone – steroids. However, it is this drug which is currently stopping my brain swelling and therefore preventing the headaches and reducing the risk of seizures and subsequent death. So all in all a catch 22 situation!
All of this is notwithstanding the concurrent and quite considerable side-effects of the Radiotherapy which I have described elsewhere but has left me feeling so tired I can’t even begin to describe it. The other knock on effect of the Radiotherapy is that it has dulled my hearing, I guess the hairs that form part of the hearing system in my ears have gone AWOL along with the ones on my head. I can also feel that my thought processes have slowed, I am getting confused at times and I can’t begin to describe how frustrating that feels especially when I can’t do anything about it. I often feel at the moment like thinking equates to trying to run through treacle. Being in a crowd of more than about two people talking just blows my mind as I simply can’t keep up with the pace of the conversation, it’s all somehow like being the drunk person in a room full of sober people, just without the fun element.
I started off in August upon my initial diagnosis on a massive dose of steroids of 16 mg (8 tablets) a day. Result, 72 hours later unbearable six month headache gone (fantastic), unfortunately also a loss of ability to sleep or go to the toilet (No. 2) for four weeks (it’s a funny ha ha subject but I can’t begin to describe the physical pain/agony, frustration or sheer embarrassment of it), this combined with the other side effect of a massive and uncontrollable increase in appetite created somewhat of a clash in my body, I’ll leave the rest to your imagination. Thankfully with the help of my very good GP Dr Tony Wilman we have eventually gotten the latter problem to a manageable position although it’s still far from perfect. The uncontrollable appetite (and it really is like a drug fuelled crazy demon in your brain telling you to eat, eat, eat) has also meant I’ve piled on tons of weight, none of my bloody clothes fit me any more and it severely pi**es me off! I am fighting all day every day and have been for weeks the urge to eat created by the drugs, desperately trying to lose some weight.
I would like to exercise more but my complete loss of energy due to poor sleep – one hour last night, in a chair, now ask me why I’m tired - combined with the other joyous side effect of the Steroids – wastage of the major muscle groups – means that mentally I need to drive myself to a level I struggle to attain to even go out and walk the dogs. Added to all of that and a new one on me is Oral Thrush. I had it for a number of weeks and didn’t even realize, it was my Consultant who spotted it. I’ve been on medication for a number of weeks now but had to go back to the Doc this week as it’s simply not working, it leaves your mouth feeling constantly dry and burnt tasting, bonus.
The situation is very slowly getting better, I said I started off on 16mg a day of Dexamethasone at the end of the August, that has now been gradually reduced over the last 3 months to 4mg a day. This was attempted twice before but saw a return of the killer headaches so I had to rapidly go up a dose again. For the last week I’ve been on my third attempt and it seems to be working – no headaches! If they don’t return in the next week, then I may be able to reduce to 2mg a day which will be heaven! I am hopeful then that sleep, appetite and energy levels will all slowly return to a level which is nearer normal.
Update, reduction to 2mg was a failure and upon medical advice I am now on 6mg a day again, frustrating but that’s about as low as my body seems to be able to go without the headaches returning.
I think that’s enough of my rant. In summary, I’m constantly tired, very occasionally I have energy and yes you guessed it I am starting to get frustrated. I am missing work, I’m gutted I’m not going to Afghanistan with my former Squadron, Remembrance Day has really rammed that point home. In general my morale remains good although being stuck at home is starting to send me stir-crazy, getting up to Manchester helped and I am – dependent on medical appointments – going to see my brother and his family for a few days this week. I try not to but I do worry at times about the future, I was originally told in August I had 4-6 months and we are about to hit the 4 month point, although my Consultant seems happy that the situation has improved considerably. It’s still hard not to think that I’m about to enter ‘borrowed time’.
However, remaining positive, I guess another way of looking at it is that I’m about to enter the period where I am proving that I will beat this and every day is a victory. I am content now that I am going to make Christmas, my next target is Spring.
I hate winter at the best of times, this one is going to be a real challenge. God Damn daylight bloody saving!
- What Are the Side Effects of Dexamethasone for Myeloma? (everydayhealth.com)