199. Oh well...

 

I just thought I’d start with something cheerful (not) to give you an idea of how we are being encroached on. No excuse for the patio apart from 1. It’s useless as a patio as it is waterlogged from underneath, thanks to the changed water courses on the construction site. Water just bubbles up and covers several slabs 2. I can’t grasp a weed to pull it up so I’ve done nothing 3. Dennis has his work cut out mowing the lawn and breaking lawnmowers 4. We’ve lost heart - and I think many people would. This is how it was when my cancer story began: 

So, back to my cancer story. Yesterday I waited till 2pm for my 10.30 telephone consultation. Despite being added to Dr U’s list, I had yet another unfamiliar oncologist, a Dr S, who was willing to answer all my questions. It seems some of the referrals have been made (the various departments communicate by letter - can you believe it??) but some have not, being left as draft letters in my file. So she needed to get back to Dr U to find out if this was deliberate or not. I suspect not. She did say she would email each of the departments to back up the letters but she contradicted Dr U who believed Neurology wasn’t a good idea. She thinks a referral to Neurology is essential. I pointed out that Dr D referred me in December, the same time as she referred me for an MRI in preparation for my appointment with a neurologist. When this new doctor asked how that had gone, I was able to say I never heard a peep from them. So, if she’s putting any hope in a referral to Neurology, I’m not.

If I sound down-hearted, it’s because I am. Having asked all my questions, the summary is that, having had side effects x,y and z for so long, I should regard the side effects as ‘probably permanent’ as they should have gone by now. This includes: 

1. One numb arm from the elbow upwards and a tendency for an unreachable itch... for the duration.

2. Two very tender breast muscles above and below my scar, on two ribs, caused by radiotherapy but, she says, also likely to be the consequence of major surgery (so why didn't I get the pain till 10 months after surgery? I didn’t bother asking) so...for the duration.

3. Two very painful hands requiring daily exercise... for the duration.

4. Two very painful feet

5. Two painful knees. 4 & 5 will depend on how I get on with a physio (if I ever get to see one. Telephone diagnoses seem rather harder when it comes to physiotherapy)

6. Loss of muscle strength on the right side, with dropped eyebrow, droopy eyelid (looking quite pert while the other one has its own un-cancer-related problem), reduced internal muscle action and one incredibly droopy upper lip when I am tired...depends on Neurology. For that, read for the duration.

7. Tingling fingers, toes and lips...for the duration. 

8. I forgot to mention difficulties swallowing and dry mouth/throat so I’ve no idea about that.

She told me I am one of a very few unfortunate women to be so adversely affected. Like that was going to cheer me up. Hey guys, I’m rare, if not unique!

Dennis and I had a long conversation about where we go from here. I do wish I could cry with frustration as I don’t seem to accept her diagnosis. NO-ONE HAS SEEN ME IN PERSON. I won’t accept that a life of frailty lies ahead as a result of effing cancer treatment. It’s not even the cancer. It’s the treatments! I can’t imagine not swanning about sporting the latest Jigsaw but I’d have to drop at least 2 stone to revert to that, be able to trust my feet and knees to support me, be sure I wasn't going to trip over my own feet while walking and generally feel good about myself.  Am I going to have a future of elasticated waists, flat Hotter shoes (with orthotics of course) and Damart outer wear?

Mammogram on the 15th. No wriggling out of that but, ON THE BRIGHT SIDE,  she did say I was ‘very unlikely’ to get a cancer in that breast. I’m not even going to think of the unasked questions.

198. Hee-aad, shoulders, knees and toes, knees and what?

I have every good intention of updating this, then I think things are too miserable or too complicated or mañana. I’m good at mañana :)

Today was an Otley day, both of us booked in for our flu jabs, so I also booked my follow-up at Specsavers. The Medical Practice website said be prepared for a wait of up to 20 minutes. We were the only ones - straight in and out, though poor Dennis got caught on the hop and found himself having the pneumonia jab (which he’s always declined - he only did the flu for me when I was having chemo, he doesn’t believe in medical matters for himself). He now has two stiff shoulders. I told him to press hard to reduce bruising but...deaf ears.

                                 

It seems I have selected two pairs of blue glasses. I went for green, a kind of teal (possibly my favourite colour). I had little interest in trying on glasses on the last visit and just plumped for a smaller and a larger design. One is a distinct blue to me which, once my faulty eyelid is sorted out, should enhance my blue eyes before they fade completely; the other is a grey tortoiseshell but with subtle splashes of blue I hadn’t noticed. What’s happening to me? I’d have spent hours, if not several visits, selecting the most flattering. Now, all I care about is will they stay on and can I read better? The answers are yes and no. It turns out the blurred eyesight is my lazy eyelids, not a fault of my sight. 

I am making steady progress with the MySarah exercises. I’m into Session 3, which last two weeks. Hold the holds for longer and increase the repetitions from 5 to 10. That takes well-nigh an hour, after which I have to do my leg and heel exercises and I’m worn out. My hands still hurt but I have to admit that they take far less time to unlock, to achieve mobility and for the pain to go away. The exercises have to be worth it. I got a call giving me an appointment at Chapel Allerton Hospital Occupational Therapy, which was a bit of a surprise but I felt chuffed because it meant at least somebody was going to physically SEE me. Then I got a call the day before from the team leader who’d done my initial phone assessment and got me onto MySarah. She sounded quite indignant that I’d accepted a hospital appointment when she’d suggested a phone reassessment. Since it’s her team, she should know what’s going on. Result, no physical appointment, a phone assessment and another discharge. Ok, that’s hands sorted then. By phone.

I confess it was a relief - I‘d have had to leave here at 7.45 to get there on time. The phone assessment was somewhat half-hearted. She was thwarted by the fact that Dennis does all the housework and neither of us is bothered for proper cooking! I get the impression most OT is based on getting one to use the vacuum cleaner, manage a mop, chop vegetables and such-like. Don’t think I don’t fully appreciate that I am spoilt...but not quite a brat?

So that just leaves tomorrow’s oncology consultation. I need to get together my questions (including has the referral to physio been made because the OT says it’s still marked DRAFT - honest, this is the story of my health). And as soon as I wrote ‘that just leaves...’ my stomach lurched because I have a letter with a date and time for my mammogram which those of you who are familiar with me know is anathema to me. Close to my idea of hell. I am going to go back a year and read my blog to see if I can draw any comfort from the experience but I’m sceptical.

I have some great photos of the building site as the houses get roofs on. I’ll save them and just leave you with the view from my bed the other day. Should I wave?

197. Goal #1 Achieved

It may not be much in the grand scheme of things (whatever that is) but I have achieved my first goal in the MySarah project aimed at people with rheumatoid arthritis (which I don't have but I have to do the exercises). I have opened my own bottle of water using my hands. It was bloody painful but it means I have some grip again and I have some strength. Big pat on the back (actually that’s one of the hand exercises tho I don't get why). Next goal is to do it pain-free but as I’ve only just finished week 2 out of 12, I guess it’s early days.

I cannot convey the sheer delight of using therapy putty.

I could play with it for hours. However, you can’t take your mind off it for a second. Touch something and there’s a green mess that seems impossible to remove. I rested my hand on the tv handset and had 5 bright green keys. You can’t pick it off!! Thanks to Google, I learnt that a dab of hand sanitiser will remove it - a little miracle to unscientific me. The other thing you cant do is touch another batch of putty. Do that and you are dealing with countess strings of putty that get so thin they are almost invisible - but the two pieces are still attached. It’s like it has a mind of its own. So much for a simple way to reduce the time on the exercises - I thought if I got one lot for each hand, I’d have things sorted. Forget it. Anyone want a pot of green therapy putty??

Yesterday, it was back to the pool, which we had all to ourselves so I was able to focus on water walking. It sounds so easy and it looks so easy but when you’ve no muscle strength, it’s quite hard. I was actually quite proud I could walk or wobble a full length, ending right on tiptoe/points, but I’ve watched a couple of videos about how to do it this morning and, of course, I was doing it all wrong. Better luck Tuesday. I’m building up the number of lengths (swimming or walking) but I can’t do more than two without collapsing with exhaustion. I also counted the number of strokes I did in a length. I used to be able to cover the full length in 6/7 breast strokes. Now it’s 25. I think I’ve a long way to go!

On the down side, we’re creeping closer to lockdown in Leeds. They’ve done very well in my opinion, the Council I mean, keeping track of where precisely it is, but the number of cases is increasing at a frightening rate and I can see it will be back to isolation and no trips to Cookridge Hall. No more entertaining in the garden, as we did yesterday. I might not even get back to Otley for my new glasses or our flu jabs (week after next). It’s just wait and see. I just don't get why everyone can’t take a long-term view, can’t see beyond the implications for themselves and basically why many people don’t seem to grasp the notion of transmission. Result - Leeds’ figures are way too high for comfort.

196. Happy Anniversary?

A few weeks back, a woman asked on one of the Breast Cancer Now forums when was she entitled to celebrate her anniversary - did she date it from her mastectomy, or the end of chemo, or the end of radiotherapy? When could she say she was free of breast cancer? I kind of got the impression she was desperate to find something positive to hold onto. I remember a few of the comments I made in my reply 

• I was told (so Dennis says) that I was cancer-free by my breast surgeon when he visited me after surgery. It had all been removed by the surgery and what followed would be to make sure it didn’t come back. That was October 2018.
• I was told by T, my adjuvant oncology nurse, at our first appointment that my bone scan had confirmed that I was officially No Evidence of Disease ie. cancer-free. This would have been January 2019.
• That when I finished radiotherapy, I didn't have the slightest inclination to Ring The Bell because I knew hormone or endocrine therapy was to follow, as well as five zometa treatments over the coming three years. How could I ring the bell to celebrate the end of treatment?
• That I felt inclined to look at the day I noticed my bumps on my nipple and knew I should make an appointment with my GP as a lifesaving day. The sunlight caught the bumps which caught my eye. In the days of Covid, I fear a GP would be likely to say over the phone that it doesn’t sound like anything to worry about and get back in touch if anything changed - after all, both my GP and my breast surgeon reacted the same way: some interest/intrigue but no concern - till the biopsy results. I decided as I wrote that post that I would celebrate 12 September as my Lifesaving Decision Day, something truly positive.

So what has gone wrong? I’m not sure but I spent yesterday and today, my anniversary, in a ball of misery. Mostly it’s bitterness at the constant pain and the utter fatigue that sweeps through me. Bitterness is not a great feeling; it can eat away at you, as I found during the years I found it impossible to accept my infertility. I prefer the anger I felt last week but Dr U defused that. 

An ill-chosen comment hasn’t helped. I wouldn’t repeat it but the effect has been that some of that ‘what if’ feeling that every cancer patient has to live with but which I’ve successfully processed and tucked away safely somewhere in my head has seeped out and suddenly I don’t feel as safe as I did. That’ll teach me to be so smug that I had that bit sorted!

So today is my breast cancer anniversary and it feels horrible. A touch of what if the cancer comes back almost smothered by what if this damage is permanent and I’m condemned to a life of pain, misbehaving joints, slumped walking and generally not being myself. I know I’m getting on a bit now (sorry, girls) but I didn’t expect on the gloriously sunny September day two years ago to be so rapidly reduced to a self-pitying pessimist. I don’t think anyone expected it, certainly not the oncologists (though they knew I was in for a tough time). Have I been unlucky, more unlucky than most of the tens of thousands of women who face the shock and horror of this diagnosis every year in the UK? I don’t think so. I think everyone has their own issues in the aftermath. I wonder at Mum. Part of me is in awe at how she just got on with things, each time. But another part of me wonders - did she have that gnawing fear that it might come back a third time, always there like a Jiminy Cricket whispering on her ear?

What now? There are a few anniversaries coming up that I have no plans to mark, thank you very much. Should I celebrate surgery day - all cut away, all cancer removed along with a whole breast and one of the lymph clusters? Feels hard to think about that, apart from it being a bit of a blank. Anything after that, no matter how good the news, is tinged by the fact that I felt like shit. Maybe I’ll have to wait to my 5 year anniversary, after which my odds against a recurrence improve considerably. It’s a long wait. Oh shut up Jan. You’re here. Be grateful. Without those freckles, you would still be happily going your own way, carrying a stage 4, probably terminal cancer bomb ready to be dropped on you at any moment. Yes, today was worth celebrating even if I can only do it by toasting myself now with cold water, some crushed Tuc crackers and a few grapes!

And an outdated discount code :) 

195. Do I really want to hear the truth?

 Before anyone panics, I don’t mean about cancer recurring!

Thursday, I had my telephone consultation with Oncology. Much to my pleasure, it was Dr U, the young (well, relatively) Irish consultant who had dragged me through my chemotherapy so he was familiar with my history and I felt able to speak in free-flow. Poor man. I’d already talked with a Macmillan nurse and been slightly alarmed but I asked the same question and at last got an answer. There is no such thing as cancer aftercare specialists for adults. They exist for young people but not us. It falls to oncologists to follow things up and to GPs (not encouraging when you have a GP like mine who admitted she had no experience of cancer treatment side effects. Why didn’t I scream that it is her job; if she hasn’t the experience, then get it!). Dr U said there should be such a service - St James’s is the regional centre of excellence after all - but there isn’t :( 

So we were off to a bad start. Remember I was nurturing my UTI at the time and waiting for antibiotic magic to work so I was perhaps vulnerable. However, Dr U took me seriously and asked me to list my symptoms in order of severity. That was a long tale of woe and I confess I omitted to mention a few things like still being wide awake at 2am but I offloaded a lot and he is the first person apart from my therapist who has listened to the whole picture. Then he drew up an action plan with me and made sure I was returned to his list so we’d get continuity. Brilliant. Dr E has been very nice but I don’t know her from Adam. Dr D, with whom I completed my treatment and all the follow-ups is way too focused on results to bother with a holistic picture.

So where am I? 1. My MRI showed nothing problematic, nothing that would cause my lack of balance, misjudgments, muscle weakness etc. 2. Peripheral Neuropathy (which I may have permanently, it was always a risk but it’s still early days) DOES cause neuropathic pain (contradicting Dr E) so my weird pains have a possible cause. Example: I stood barefooted on the carpet and lifted my foot to dry it because I was sure I was standing in cold water spilt on the carpet. It didn’t matter that I knew the carpet was dry!! Confused messages to the brain. 3. Neurology may not be the best team to look at my balance etc as they tend to focus on specific disorders and take a long time to arrive at a different conclusion like chemotherapy after-effects. So here comes the humiliation 4. He wants to discuss my case with the Frailty Team. My mum went to that clinic when she kept having her falls!!! He did say they might not see me as I am far too young for their service but the insult had registered. Insult? To be honest, I guess I am a bit frail and I really would like to regain some of my upright stability. 

I now have to wait 4 weeks till he rings me again with a proposal or even a sorry, nothing doing. Meantime, I have registered with MySarah and I’m doing my hand exercises daily. I hope to return to the leg exercise tomorrow, now my bladder feels more secure, and go for a swim next Tuesday and just pray my GP was right last week when she said it was bad luck and not swimming that caused my UTI.

Fingers crossed that there is something out there to get me back on track. I feel something of an invalid right now. But I treated myself to a lovely bouquet to cheer myself up (and supported our local businesses): 

And I got invited by the Breast Cancer Now site to join their Community Champions as it’s been noted that the replies I write for others are “consistently kind and thoughtful.” What a lovely compliment. Sadly, I’ve had to say no for now as I think I need to get myself sorted out but maybe anther time.

193. Testing, testing...not testing

Completed 3rd September. I’ve not been my usual (?) chipper self:  I’ve dutifully been making my contribution to Covid-19 research since its introduction in March. It’s run by King’s College, London and I sent the link to all my contacts so if you aren’t doing it, it’s not my omission. It has contributed immensely to understanding of the coronavirus, including providing the data so loss of smell/taste were added to the official list of core symptoms, so it feels worthwhile. It’s simple enough: 2 questions daily. Unless something is amiss - and that’s when I question my civic duty in the face of such confusion. 

Instead of clicking ‘I feel the same as normal,’ I clicked the alternative because my IBS had sneaked back. In fact, I had a tummy upset following my first foray to the pool at Cookridge Hall (I have this plan that swimming will help build up some of that missing muscle mass I apparently have and also build up my stamina. If you’d seen how little I managed first time, you’d question if it was worth it). The questions that followed in the survey were simple yes/no responses. Yes, I had an upset stomach and yes, my appetite was poor, unsurprisingly. The next thing I knew, I had an email saying my responses indicated that I had (or didn’t have) some of the symptoms of coronavirus so would I be willing to take a test? They were asking people with and without symptoms. So I agreed.

Meantime I was faced with ethical decisions. I knew I didn’t have coronavirus but I didn't have the proof. I had to tell my potential visitors even though they would be sitting outside. End of visits. So then I thought what if they are right and I’m wrong? I’d have to do the test. The test arrived very quickly but not quickly enough - a home test has to be done within 4 days of onset. I didn't even understand the posting directions - within not more than one hour before the time stated for collection. Eh? Did that mean I had to post it in the last hour or before that last hour. It was Saturday anyway so it was academic. No test!

You’d think that would be it but no. My tummy settled and back on track for swimming, did I have the moral duty to stay away just in case some algorithm was right? If it was right, I’d be putting others at risk and risking people’s jobs. So I decided I’d better not go till 14 days since the tummy upset had passed.

Then it was back in my cossie, manage to swim further and do more leg exercises like water-walking (bloody difficult when you’ve not much strength) and then a UTI, from which I have yet to recover. Sadly, no swim this weekend, although my GP did say both the tummy upset and the UTI are just bad luck, not the pool. My oncologist says the reverse. Why does no one deal in facts any more?

194. This is getting ridiculous

 Sorry folks. Almost everything has been so unrelentingly miserable that I chose not to write my blog. I have entry 193 started and unfinished - started on 9 August. Also, they’ve changed the format of Blogger and I struggle with it. My apologies but maybe this is telling us something...

Anyway, to make you smile, I’ll reflect on our 49th wedding anniversary. I’ve learnt to have no expectations so a “Happy Anniversary“ delivered along with my morning cuppa was pretty much going to be my lot. I got Dennis a book he was keen to read and I sent him a bouquet of flowers. I chose a white concoction with an unusual green flower because it included three very large white chrysanthemums. Very early in our marriage, Dennis had gone to Leeds market to buy his new wife a bouquet to celebrate two weeks in our new house. Yes, he could make wonderful little gestures. When I opened the door, he stood with this huge bouquet of TWELVE giant white chrysanthemums. He’d carried them home on the bus. I’m afraid I just burst out laughing because it looked like he was holding a wreath and, yes, I have not had flowers bought for me since. As they say, my bad.

I included what I thought was an amusing and loving reminder of the legendary white chrysanths but it was wasted. I left him to arrange his own flowers and noticed them in the hearth. I found it hard to believe my eyes. I decided to say nothing and see what happened. This picture is Day 8.

Eventually I had to ask him what kind of flowers he’d got. He had no idea (so much for my loving message meaning anything). I then gently slid off the green plastic protection M&S had put on their blooms to reveal their real glory. The rest were dead of course. That was 14 August and two of them are still going strong so maybe they enjoyed hibernation. Not bad value, M&S! And the cat adores fighting with the mass of falling petals.

I’m killing time before I am able to take my new medication - a  single dose of a strong antibiotic since the last batch didn’t get rid of my excruciating UTI. It’s been a real farce trying to find something that I could swallow (another long story I’ll spare you) but I am allowed to take it at 11pm, having taken all my night meds early. No food 3 hours either side and no peeing. THAT is a tough order but I’m hoping it will work quickly and I’ll sleep through the night. How does such a tiny part of the body create such appalling pain??

Tomorrow I have a telephone consultation with an oncologist. I don’t know about you, but I kind of expected things to be back to normal by now so I had a long chat with someone at Macmillan who advised me to go on the offensive now because things have been dragging on way too long. Indeed they have. Here is a peep inside my bottom drawer with all my meds organised by importance, spare boxes stored at the back:

It’s ridiculous isn’t it! But if it’s necessary, then I’ll take them as directed (apart from the diazepam, a luxury I don’t often use). But are they doing any good? I don’t feel any better and in fact I feel markedly worse. Hence going on the offensive tomorrow with the poor oncologist, who probably won’t know me from Adam. I can’t go on being permanently ill - but that’s how it feels right now. That’s why I haven’t been writing my blog.