I’ve often thought about writing a diary, keeping a journal or starting a blog but didn’t really know how to go about it. I don’t want to bore everyone with life “as a cancer patient” but equally wonder if my children might like to read it in years to come when I’m not here to tell them what life was really like. So bear with me as I start my first blog – who knows, it may be the first and last!!
It’s been a while since I last did a blog. The last one I did I wrote a few months back so I cheated!
I really thought my time was up after the second craniotomy in June. I was very down and cut contact with virtually everyone. I became a recluse and only felt safe in my own home. I even avoided chemotherapy one day because I couldn’t face it. At this point, I wanted my time to be up. I wanted a way out.
This is the first time I’ve not hand-written it first – basically because I can’t write now. I slur my speech; I have muscle weakness in my legs due to 9 months of inactivity; I can’t walk; I can’t drive; I can’t put/take things in and out of the oven / washing machine / tumble dryer because I can’t bend down that low or I don’t have the co-ordination; I have blurred vision and a fat face and fat stomach due to the steroids I have been on since April; I now have weakness in my hands up to my elbows. And to top it all, I am losing my hair for a third time.
I am getting help from a Physiotherapist, an Occupational Therapist, soon-to-be a Speech Therapist; a Counsellor; and some anti-depressants.
The school holidays were a blessing for me as I could stay in bed a little longer, especially when steroids kept me awake for 2 hours randomly in the night! My life seems to fit around medical appointments and I’ve had to be selfish with my girls. It’s been a change for all of us: Annabelle and Jessica have had to help me with fetching and carrying and Adrian has had a huge amount to do when he comes in from work.
After all this time of not being able to do much, my oncologist thinks it is unlikely I will fully recover. My options are running out. I can try another chemotherapy (the previous 3 haven’t worked), stay on steroids, opt for whole brain radiotherapy or do nothing. If it was just me, I might take the final option but I know I have to (and want to) look out for my family. I have seen the oncologist today and have opted to stay on steroids until I have an MRI scan on my head.
Amongst all this, my Dad died. He was determined and strong-willed throughout his illness. If I only take a small piece of this to carry me through, I know I am doing the right thing. RIP Dad.
Chemotherapy can be the pits. Everyone reacts differently and I was probably quite lucky the first time round in 2007. When I had the same chemo in 2013, some of my luck had run out as I experienced lots of the known side effects.
Constipation and diarrhoea: the extremeties of either! If you think you’ve probably had one or other, you may know. Add a few extra days/weeks to either and you definitely know. And when you’ve got one, you want the other and vice versa. Who knew there were so many side effects as a result of constipation or diarrhoea? And who wants to talk about it?
Scars: I have more scars and tattoos and signs of cancer than most people will ever have. I wouldn’t wish any of this on anyone but sometimes the enormity of what I have been through (chemo, mastectomy, radiotherapy, Herceptin, reconstruction, CT scans, MRI scans, bone scans, more chemo, more radiotherapy, more chemo, Herceptin with Perjeta; Denosumab, bone mets, lung mets, brain mets, brain surgery twice, more chemo, tablet chemo) just gets too much.
Death, dying and funerals: as taboo as you can get yet the one thing we all have in common. Who wants to talk about it?
How my children and Adrian are coping: to the outside world, they are coping. In our family world at home, they break my heart and I know that I am breaking theirs even more and there is not a thing I can do about it.
Hairloss: I have gone through this twice so far and each time has been incredibly traumatic. I have laughed it off with comments “it’s only hair”; “who needs hair”; etc etc but it is one of the visible signs of cancer and that few months can be the longest ever. Add in no eyebrows/eyelashes and it really knocks your confidence to an all time low.
Secondary breast cancer: everyone means well but the reality is I won’t get better from secondary cancer. It will be a very up and down journey but there is no cure.
Steroids: I was on them short term (3 days during chemo) and then longer term earlier this year and have been on them again since mid April. I can’t stop eating! I have put on so much weight due to over-eating and inactivity and am really suffering with moonface and fat stomach. There is nothing I can do about this so I am just going with the flow! The worst side effect is not sleeping. This is very random at what time of night, but usually lasts for 2-3 hours.
MRSA: the flesh eating bug! We might all have it but when on chemo or having an operation, there are much higher risks. Earlier in the year I had MRSA which really hindered my progress. I got it again recently in the same site and had the same antibiotics which really affected my mood.
Inspirational and brave: lots of people don’t like those words being used to describe them. I don’t have a problem with it but at the end of the day, I am behaving in the way anyone would. You deal with what life throws at you and get on with it. Everyone has days where they crumple and don’t want to carry on and I can tell you there are plenty of those.
Driving: I now can’t drive for up to 2 years and have had to send my licence to DVLA. This has a huge impact on me and the children especially. I have lost any independence and I can’t make plans in the holidays now unless someone has a bigger car or I can use public transport. It is all things I can get around but takes a whole lot more planning and a lot to get my head round.
Mobility Aids: I now have crutches, a wheelchair, toilet frames, a walking stick, a perching stool for the shower/kitchen and a rubber mat for the shower because my feet are always slippery. I didn’t realise there was so much available.
Amazing friends and family: through all of this, I can honestly say I am completely overwhelmed by the help and friendship I have had from childcare, ironing, meals, cleaning, lifts etc etc. It means so much and I can’t possibly thank you all.
As you may know, I had a second craniotomy (brain surgery) a week ago. Each subsequent time is more serious than the first and carries more risks. I was kept asleep for about 12 hours because I lost about 3 pints of blood (see how important it is to donate blood if you don’t already) and my platelets are low (under 100 when they should be 150+). I was eventually moved to ITU for about 24 hours before being moved to a ward. I have been left with blurred vision and speech problems which hopefully will sort itself out over time. I am unable to speak as well (some say a good thing!) especially when tired as I sound drunk most of the time – maybe that’s the answer! The one thing that has remained constant for me over the last few days is how chilled out I am. It has probably got me through the operation and the last week.
My first goal is the Charity Ball on 25 June! I know I can’t do as much but it will be great to be there and do what I can!
On 23 March, I saw the girls off to school as usual. Then went back to bed. Until 7 April. I barely got dressed; I hardly ate; I missed Easter weekend and Annabelle’s birthday and I became so weak, I could hardly manage the stairs and had to hold the basin to get on/off the loo. All I managed in that time was a trip to A&E Brighton as my temperature rocketed to over 39C; a Doctor’s visit in the middle of Annabelle’s party and a 4 hour visit to see the oncologist (thanks Doctor’s strike) on 7 April.
When I saw the oncologist, he performed a number of checks and tests on me but also confirmed what I had been feeling during chemo at the beginning of March and throughout the time in bed was a normal reaction to the news he had for me since my brain MRI scan. Unfortunately, the surgery I had on my brain has not worked. The brain metastasis (secondary cancer cells) have reared up again in the same place next to my cerebellum (co-ordination/balance). He put me on steroids to give me a pick me up from feeling so low but also to reduce any swelling I have in my head. It has worked but has made me want to eat constantly!!
I feel much better than I did a week ag0, 2 weeks ago, etc. I’ve even managed 2 trips to London in a week, albeit by train then cabs. Nothing like a bit of luxury!
I started back on chemo (Kadcyla which is IV and Capecitibane in tablet form) on 20th April. It was 7 weeks since the previous chemo as I was too unwell. The downside is that my portacath was not flushed and is therefore now blocked. I have to have an operation on Wed 4th May to have it replaced.
I am currently in limbo as I only have steroids and chemo to keep me going. I see the oncologist on 12 May so will know more then. I have been left with an inability to write properly, my co-ordination is bad especially when I have done too much and constantly blurry vision. And every small thing is a small achievement for me.
In all this time, I have never felt as heartbroken. The more I think about things, the more heartbroken I am, especially for my children. Secondary Breast Cancer is so unfair on them. I wish so much I could be there for them in the coming years and yet I know I won’t be. I can prepare them as much as possible but for what? Is it selfish of me to want to be there? We all take so much for granted, one of them being that we will nurture our children. None of us knows how long we have got and yet we assume we will be there for our children. All along I’ve wanted to assume it and a small piece of me has said it won’t happen but I didn’t want to listen.
Reality has suddenly hit me about a lot of things. 2016 has been truly awful. I have had so many setbacks this year that it is difficult to see beyond it. I just want to go out, create memories and spend normal time with my girls, family and friends and it is hard to do any of it as I form a lump on the sofa in between trying to pace myself.
It’s hard to stay positive when your children come asking you questions about dying, illness, etc. I feel it is my duty to answer them honestly and I can’t make promises I know I can’t keep. My children see me through the tough times but I know I won’t be here forever. It is hard to hand over the reins.
5 medical appointments
In 7 days.
And there’s me thinking everything will get easier now. But it just got a whole lot harder.
A week last Wednesday, I started a new chemotherapy (called Capecibitane – I can’t say it, so like most users will just call it Cape!) in tablet form (10 tablets a day). This is in addition to the chemotherapy (Kadcyla) that I have been on since September 2015. Kadcyla is now being used against the metastasis in my lungs and bones and Cape in my brain.
It seemed a good idea when it was first mentioned by my oncologist but after the last week of side effects, I’m not so sure (side effects for me have included severe fatigue, shivers, nausea, lack of appetite, aching joints, sore and hot feet, lack of short term memory). I only hope the second cycle is easier as my body gets used to it.
In addition to coping with new side effects (brain surgery seems relatively easy in comparison), I have had numerous medical appointments hence the 10 helpers to get Jess and me to and from school and me to and from appointments.
I saw the spinal surgeon who confirmed my MRI scan of my spine revealed I have no further spread or change to the current vertebrae affected. This therefore rules out cementing my bones until a later date. Relief! But I am left with a number of choices which involve either taking more tablets up to 3 times per day or injecting steroids directly to the bones, performed as an outpatient.
I had a head MRI scan. The first since my craniotomy. I will now have to wait a month for results. It is also the first kind of follow up for my brain since surgery at the beginning of January, despite my best efforts to get an appointment and even resorting to email! No-one seems to want to deal with it so it’s down to the oncology team.
I have also been to the opticians this week as brain surgery can leave some visual problems and as I still have blurred vision it was recommended. It turns out I am reaching ‘that age’ of needing reading glasses! No lasting effects from surgery. Phew!
How am I supposed to fit in coffee/lunch with all this going on?!
As ever though, my mood fluctuates with the wind. One minute I can find the energy to meet up with friends, carry out a regular chore, take a (very) short walk and the next I am left totally exhausted and virtually unable to do a thing. Even answering phone calls/messages can be too much partly because it depresses me to go through how I might be feeling or explaining to others and yet I need to talk about it – a vicious circle for all involved! It hurts to hear about those who have made it to the “ripe old age of…”; those who mention driving from A to B; those who have already planned their short breaks or holidays. And yet I know they are everyday plans that – in a good mood – I want to hear about and I desperately want to make my own plans.
The following link may help to explain some of what I am feeling:
Good news, however, is that Liz and I are planning another Charity Ball. Nothing like taking too much on!
A few months ago, I thought I’d hit a real low point. Now I know what rock bottom is.
My craniotomy is 6 weeks ago. By now, I would expect to be doing more – which for some things I am. What I haven’t done is walked anywhere alone (no energy and breathless), been out anywhere on my own (can’t drive) or done anything for more than about 2-3 hours (too much effort). At the end of any “outing”, I feel breathless, shaky legs and have some blurred vision (actually that can happen just going upstairs to bed!). All symptoms are normal I’m sure and show a lack of activity for the last 2 months. I have no follow up appointment and am unable to contact anyone as I have tried but otherwise don’t know where to start.
Throw in to this mix of brain surgery, I have also had a boil which turned out to be an abscess. After further testing (at my insistence), it was diagnosed as MRSA. I had 2 weeks of strong antibiotics which have done nothing apart from give me 2 more abscesses in the same area. I am now on different antibiotics as agreed with the microbiologist and I think they are finally working. What they are doing is messing with my mood. I have become (even more so!) the wife and Mum from hell!
Or maybe it’s just a combination of dealing with everything. Not only do I have the after-effects of the craniotomy, the 3 MRSA abscesses for which I have worn a dressing now for 4 weeks, various antibiotics, lack of knowing who to contact (and I really do value the NHS), back pain waking me up every night, eating constantly which I blame on daily steroids since Christmas and am experiencing moon-face and stomach bloating, but to top it all last week, what I thought was going to be a follow-up appointment with neurosurgery turned out to be a first appointment to see whether I should have bone surgery – first referred in July last year! Oh and did I mention that I have a dodgy ovary?
In addition to all these health issues, our bedroom and bathroom are ongoing sagas. The bedroom came with its own problems just before Christmas (damp meaning most units were ruined so we had to wait until mid January) and now needs decorating to finish it; we have a tradesman in to do the bathroom – just what I needed last week on top of my spinal surgeon appointment, MRI scan, chemo and discovering 2 more abscesses meaning 2 more Doctor’s appointments. And it’s carrying on into this week – half term where I wanted to take it easy and not have to get up. Obviously too much to ask!
I wish more than anything I could enjoy this half term with my children and do something exciting with them; I wish I could make some plans but I can’t until I see my surgeon; I wish I could go back to work for some normalcy; I wish I could be a 42 year old with normal problems – whatever they may be! – for one day.
Normally I am a positive realist. Unfortunately I am not seeing much positivity right now. All I can say is that I am so grateful for amazing friends and family who are supporting me in whatever way they can at the moment. It means so much and I have no way to thank everyone.
It’s been a very bizarre Christmas for us. We had a very manic week leading up to it with various changes going on at home (bedroom/bathroom – still not rectified fully!) and very unexpected problems to go with that, not to mention a dead oven. Luckily it all came together as much as possible on Christmas Eve. Throw into the mix that I had chemotherapy on 23rd December and usually need at least 1 or 2 QUIET days to myself. That didn’t happen.
It wasn’t the children waking me early on Christmas Day. An excruciating headache woke me up for the day at 4.30am. Not a good start but headaches were a common side effect each cycle of chemo. I put on my usual brave face throughout but it was marred by tiredness and pain.
By Boxing Day, it all caught up with me and I felt dreadful. The headache was horrendous, making me nauseous, unsteady, needing to steady myself of the walls and hold on to my head every time I sat down. This was different to anything I had experienced before and should have rung alarm bells. The next couple of days were similar but less lethargic but by Monday, I thought it best to get checked out with the chemo ward. I got sent to A&E in Haywards Heath. We abandoned Christmas celebrations with the in-laws and asked them to babysit instead. Unfortunately, as ever, I was the healthiest sick person in A&E so didn’t get a private room until we had mixed with the germs for the first 3 hours! All systems go after that – various neurological tests, blood tests, emergency brain scans, IV steroids to reduce the large swelling in my head. Oh and a transfer to a ward after 8 hours of waiting.
In the half hour I was alone (between Adrian leaving to explain to the girls that Mummy wasn’t coming home and Mum and Dad coming up with an overnight bag), I got given the news that I likely had spread of cancer to the brain. One small brain met had been found on the back of my brain (the cerebellum for anyone interested) and had caused a huge swelling which explains the headaches especially on movement.
Late that evening, I was taken to my room and suddenly found myself on 2 hourly observations overnight. Sleep didn’t happen. Wide awake thanks to the steroids. Or was it the awful news that nobody knew about apart from Mum and Dad? A very busy night and even busier morning with another emergency brain scan and various Doctor visits.
I would never ever put the NHS down because I think they are an amazing group of devoted, hardworking and caring people and I would never want the UK to be without them, but sometimes I feel I have too much knowledge of Secondary Breast Cancer thanks to my years of experience and the knowledge of my lovely YBCN friends. On many occasions, I was asked if I had medical knowledge!
I was sent home from PRH on New Years’ Eve. The strangest time – coming home to find Christmas decorations were still up, lots of Christmas food still around, cards, etc. For the first time ever, I spent midnight alone. It didn’t bother me until it actually happened! But that’s another story.
The next 3 days were spent at home in a complete fog. Just waiting. I had to go into Brighton neuro-surgery ward on Sunday for the operation on Monday. My watch stopped on that Sunday. It seemed very significant to me as everything stopped in my world while everything else was carrying on. I am not one to get flustered but Sunday evening and Monday morning, I was in a state. I can’t tell you the relief at finding out at the very last minute that my surgery was cancelled until the next day. So another day to kill in hospital.
I was much calmer on Tuesday for the operation. I have been told there was a big rainbow back home and I take that as a good sign too. It felt more right.
I have never been as frightened going into the operation and going to sleep after the op. The underlying fear for me was that I wouldn’t wake up. I wasn’t ready to go. I had too much still to do – both practical and real. I wanted more time.
I have been granted that gift but this kind of diagnosis has an effect. Relatively speaking, I have sailed through Secondary Breast Cancer for the first 2 1/4 years and I know that this can be the start of changes. There is a finite time to SBC and if I’m honest, I am reaching the averages. I will do everything I can to beat that average, but at some point reality will have to take over for me and nature will take its course. For now, I will take a day at a time and every day with my family and friends will be a blessing and I hope to get all the statistics wrong!
On Monday, I was given the good news that the chemotherapy that I have been on since the end of September – Kadcyla – has stabilised the cancer. There is no shrinkage (yet) but more importantly there is no further growth and no spread. This is great news and doesn’t get much better for me (unless I’m lucky enough to get NED – no evidence of disease). However, with this positive news, comes the reality…
There is nothing dignified about my 3 monthly CT scans. Sitting in a draughty corridor in a see-through hospital gown (at least I was wearing decent knickers!) which gapes in places it shouldn’t with socks, boots and a coat to accessorise and keep warm. Three times of being asked if I’m pregnant. No, cancer took any further opportunities of that away from me. As usual, I was the youngest by 20-30 years in the waiting room. I should have been in the playground collecting Jessie from school. Instead, I was adding to her anxieties.
Following the humiliation of the hospital gown was the battle of the cannula. My veins disappear as soon as I step foot in the hospital grounds! Unfortunately, not many staff are trained to use the portacath (permanent vein access located under the skin in my chest) so 3 attempts later and the needle is in a very painful place on the inside of my wrist. I felt the bruise as soon as the contrast dye was injected. The nurses felt my pain and humiliation as they removed the cannula instantly afterwards instead of waiting the usual 10 minutes!
I have recently developed sciatica. It is highly likely that the pain I get in my buttocks, legs and feet is sciatica. The dodgy vertebrae I have in my lower spine is pressing on the sciatic nerves. The cure for this and other issues will be surgery on my spine. I can’t remember the technical term but basically it involves cementing the vertebrae which is collapsing thereby strengthening my spine. Hmmm might have to think about the pros and cons of that one.
I have now officially retired due to serious ill health and have drawn my pension. Very bittersweet. I miss working. I miss the companionship, the focus, the routine, the feeling of worthiness. I feel envious when friends talk about their jobs and progression or changes in their careers and I’m just left arranging coffees and lunches. I was looking forward to working more hours now the girls are older, but I really don’t have the energy for my family AND work. I also lack motivation and focus. I lack confidence in my abilities; my self-esteem is low and my memory is poor (recent conversations and past events all forgotten).
I have been considering voluntary work and have looked at a couple of options. One is an alternative therapy centre for cancer patients where I go for acupuncture. The criteria for volunteers is 2 years beyond end of treatment. That rules me out then.
Recently I have had a bout of impetigo on my scalp. It was such intense pain and discomfort, especially at night. It could be totally non-cancer related or a result of being immuno-suppressed but the upsetting part is I am now suffering hair loss as a result. I have a lovely 4-5cm diameter bald patch which is getting bigger. I am gutted to be experiencing hair loss when the chemo I’m on does not generally have this effect. It seems such a small thing but is a big hit on self-confidence.
Whilst I am over the moon that the chemo appears to be working, it comes at a price. I dread the chemo each time and fear the needles for scans and 3 weekly blood tests. It takes every ounce of courage and determination to put myself through it. And yet I’m one of the lucky ones. For now.