Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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At first I blamed it on my ancient 5-year old running shoes but I am not so convinced now.

@Kezzie200 I'm so sorry about your mum, do you live close to her, can you support her through this? Mine has Parkinson’s and I do a lot for her, another thing to worry about while I'm in hospital but I live next door but one to her so my teens will be in charge of keeping an eye on her.

@Silkierabbit thank you, I know if I dragged my ass onto my bike I'd feel better but I've had diarrhoea since last Saturday and haven't felt like it. The dietitian said yesterday that it sounds like malabsorption so I guess the GIST is probably having some effect on me even though I have never had symptoms (other than the usual pain)

@MrsPnut will work be good about a phased return when the time's right?

@balkanscot you're not constipated are you? I get a weird throbbing in my undercarriage if I am, almost like a buzzing feeling. Try not to think about Olivia ((hugs))
Can you get them to scan you?

I have a full day of isolation to look forward to, trying to update my will in case I die on Monday but I've now found out the bloody thing needs two witnesses which might be tricky, my divorce was only finalised last week so I really want to do it

Many thanks Mrs Pnut.

And love to you all x

@Kezzie200 I hope you find the group MrsPnut linked to useful. Thinking of you, I hope your mum is as comfortable as she can be under the circumstances. Lots of love.

@MissSmiley I don’t think I am constipated, all bodily functions are functioning well. I just can pinpoint if it is muscular/bone/neurological. It keeps switching sides as well - sometimes it’s throbbing on the left, sometimes on the right. I will ask whether my CT scan went as low as the buttocks - it said chest and abdominal on the letter. DH is not understanding at all and keeps telling me to just take a beta blocker. He is fed up of my health anxiety, I know, and with having Covid can’t be easy for him either. I took ibuprofen to see if it lessens the throbbing. Purely so that my mind stops focusing on it for a bit giving it a bit of a break.

I hope you get the will sorted out. It something I must actively start doing something about as I haven’t made one yet.

@balkanscot ibuprofen is a good idea (or naproxen if you have it) because if it's muscular it'll likely help. Odd that it keeps moving, again suggests muscular. I think bone pain is a different kind of pain.

I'm sorry your DH is dismissive of your anxiety, I think it's a bit rude to suggest you take the beta blockers presumably to "calm you down". I completely understand the anxiety, I have had diarrhoea since last Saturday and pale yellow stools, haven't had this before at all and now I'm convinced the GIST has grown or spread since my CT last month and when they open me up they'll discover it's spread and they can't remove it all, keep thinking of what the surgeon said about bit always being able to tell what's possible until they get in there :-( and my legs are really painful for some unknown reason 🙄

@MissSmiley could it be psychological, those aches & pains & bowel movements that you are experiencing just now? Pre-surgery nerves, if you see what I mean. When I get into a state or a panic attack I feel like I need to go to the toilet constantly (and it’s loose ). But I completely understand it, I was like this at every scan during chemo, even though I had an “excellent pathological response”.

Throbbing has now subsided once Ibuprofen has kicked in. Sadly I don’t have any Naproxen, I presume you need a prescription to get it? I kind of think it’s not in the bones as I had horrendous bone pain while I had to inject myself with those white blood count uppers injections (forgot what they are called now). But googling has told me that the nerves can get trapped due to narrowing which is due to metastases. Cue blind panic.

Yes., DH thinks I am just being unreasonable and hysterical. I feel like going to Maggie’s and just sitting there all day, talking to people who do understand.

@balkanscot you should talk to people who understand, definitely helps, I just had a chat with the sarcoma uk nurse about my diarrhoea and I feel better. She also suggested nervous poo but then we agreed that probably wouldn't cause it to go yellow so it probably is malabsorption or something tumour related. Naproxen is only in prescription and is a super strength anti inflammatory painkiller.

Keep chatting, we're here and we understand ((hugs))

@balkanscot I’ve got a pain in my arm when I try and grip anything that has come on since the beginning of last week. I did think the infection in my chest might be attacking my arm except my chest isn’t infected and I did DD’s paper round for her last Tuesday which is a more likely cause. Doesn’t stop me thinking the worst.

I’d ask your surgery for Naproxen because they are very good at easing pain. I have an array of just in case meds for all eventualities.

@MissSmiley You are being good isolating prior to your PCR test. I could only manage from the test to the operation and not from the rest of the family. I’d have gone stir crazy.

I will definitely have a phased return to work and also work from home 4 days a week once I am back full time. We have some training coming up in April that I need to be involved in, I would have run the project had I been there, so want to be back for that at the very least.

@MrsPnut I'm only being strict about the isolation because one of the twins tested positive on Sunday and my eldest son's girlfriend is positive. I'm psychologically prepared for Monday and will be completely thrown if it has to be delayed because of a positive PCR

I hope work are being supportive x

@MissSmiley I didn’t realise one of your children had tested positive, that makes sense then.
Work have been brilliant, I’m just missing it. I’d be in the thick of our year end audit now explaining things over and over again to fresh faced graduates that have never done any accounting in their life.

BC nurse phoned me back and was very understanding, she said she didn’t think it sounded “sinister”, encouraging that the ache has responded to 400 mg ibuprofen (leftover pack from my surgery). She thinks it’s “mechanical”. She also suggested putting some ibuprofen gel which I’ll do after enough time has passed since I took the tablet. Still no throbbing/dull ache. But I am petrified, still deeply petrified. I remember my surgeon saying “I don’t think it’s anything sinister” when I came back to the breast clinic in July 2020, so anyone saying they think “it’s not sinister” I take with a pinch of salt. Pavlov dog reaction.

BC nurse said to phone again in 2 weeks’ time to let her know if it hasn’t improved. She’ll then talk to the surgeon and order a bone scan “for reassurance”. So just chatting to her for 5 mins. has been really therapeutic, I burst out crying afterwards. It’s so hard keeping DS going as he is bouncing off the walls yet he still keeps testing positive. 🙄

@MrsPnut it is hard to steer your mind in the right direction once you have been through the cancer mill. I hope you get back to work in April as planned. I have totally lost my working mojo at the moment. My lovely line manager retired at the end of 2021 and I feel adrift both because of it and because of… I don’t know quite how to explain it, just can’t get motivated.

@MissSmiley once you psychologically prep yourself for a certain date it is hard to let go. Crossing everything for you that you pass the PCR with flying colours. 🤞

@MrsPnut I was supposed to be starting CIMA in January, I haven't decided whether to still go ahead with it after my 6-12 month recovery, I did AAT as a way to become independent and leave my marriage, my degree is in another subject but not something I can do without being self employed outside of London, i had a successful business with my EXH for twenty years but I had to walk away from that when I left him five years ago

Could you not do CIMA whilst you are recovering? At least some of the study? I sat my CIMA exams over 2 years because I was trying to cram them in. I did AAT too because I retrained from being a social worker.

Had results of my latest CT, nothing apparent ! 7 months from end of chemo so not getting too excited as know it will recur and last time it was 8 months from chemo. I also have developed a hernia, have been so careful after debulking, which was 10 months ago but one has sneaked in. I should feel pleased about the scan but I feel sort of numb.
at least Ill get to keep my hair for a bit longer!

@thereisonlyoneofme I know what you mean about feeling a bit meh at the CT scan results, even though the results are encouraging. Exactly how I have felt after being told my bloods were OK in December. Really flat. I expected to be jumping up & down with joy but no, very muted response.

@thereisonlyoneofme that’s great news and we understand how flat you feel despite knowing it is good news. I think it’s because we spend so long suppressing the terror we can’t let go and feel the joy instead. It will creep into your heart slowly.
@balkanscot have you done the Moving Forward course? It is really helpful in teaching you about monitoring for recurrence and how to deal with the anxiety. I was sorry that in the online forum nobody chatted much as I would have liked to share experiences but they just loaded modules and we read through them. Dull but worthwhile!
I’ve had a weird week as DH picked up a vile stomach upset and has been ill and miserable. That’s my job! I’ve been plodding through my gym classes wondering if I’m making any progress at all.
I’m planning a huge adventure after Easter sailing round the UK and having a lovely time doing the passage plans but I find it hard to imagine we will actually get away for three months. So many things can stop us!
Love to all
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@MrsPnut

Could you not do CIMA whilst you are recovering? At least some of the study? I sat my CIMA exams over 2 years because I was trying to cram them in. I did AAT too because I retrained from being a social worker.

I had thought about that, apparently a guy did all the exams over 6 months recently but that might be pushing it 🤣, I have all the books and I was planning to do live online lessons from home so it might work, I'll have to see how my recovery goes.

@thereisonlyoneofme I'm pleased for your good news from the scan but it's ok to feel however you're feeling, it's a long journey

@TopOfTheCliff your three month adventure sounds amazing! Can't wait to hear more about it

Talked to three of the kids when they came home from school, my eldest daughter is supporting her boyfriend after his dad died suddenly before Christmas, he's only 18 and her best friend lost her mum to bowel cancer last year too but we enviably got on to the subject of what they would be like if I died (although I'm not planning to yet) and they were so grown up and talking about living with your lost parent always being a part of you and about wanting to live a good life to make them proud. And how lucky they are to all have each other, mind blowing stuff from teenagers really. Talking and being open with teens is definitely the best way, macmillan we're right.

Evening everyone. Just catching up on the updates. I would address you all individually but I have chemo brain and can’t remember who has written what…but I’m sending you all love.

Started my next chemo regime today. I Finished 12 weeks of carbotaxel last Thursday, which i had been having weekly, and started EC today, which I’m having 4 rounds of over the next 12 weeks, so every 3 weeks. I’ve been told to expect worsening and longer lasting side effects, but on the other hand I’ll have longer in between to recover.

So I have pink wee! Glad I was warned about that. I’ve got to say I’m feeling utterly rubbish and so have come to bed. Hope I don’t feel too poorly tomorrow. I have a 3 week fatigue support course that starts online tomorrow. I’m also doing mindfulness for cancer every Monday, an 8 week course that I’m halfway through. I’m also going to get in touch with Macmillan to see if I can access some counselling. Has anyone else done this? I tried posting on one the Macmillan chat forums but didn’t get any reply other than from one of the staff/volunteers pointing me in the direction of what support is available.

Thinking of you all xx

Hi everyone my pre surgery PCR test has come back negative so we're all set for Monday. Had a call from a different surgeon yesterday to introduce himself and to say he'll be doing my surgery now. I wasn't expecting that but he sounds like he knows what he's doing 🤣

Yesterday was awful, solicitor came to the house so I could sign my revised will, I felt low and tearful most of the day. Positive to the outside world of course. But I cooked a roast dinner for my kids for when they came home from school and my mum came too, slightly less strict with the isolating after I did my test. I keep thinking about how this will be the last time I do things for a while, maybe a long while.

I had my house extended two years ago but the garden/driveway didn't get finished, partly Covid, partly builder was too busy but he's recently given me a new estimate and can start next week. It really needs doing and would be really nice to be able to sit outside during my recovery when the weather gets a bit warmer. But the quote is more than double what I was expecting, mainly due to material prices having gone up a lot. Last night my mum said she'll pay for it and to tell the builder to go ahead. So hopefully by the time I come out if hospital things will be looking a lot better.

Good news about the PCR @MissSmiley. Sorry to hear you were feeling low after the will-signing etc. Our emotions are all over the place aren’t they, it’s hard to negotiate our way through them.
A new garden and driveway sound fab, how lovely of your mum! My dad does a lot of little treats for me, I think it’s their way of doing something, anything, to help. Try to visualise yourself recuperating in that lovely new garden with a pot of tea/glass of wine/massive gin, (whatever floats your boat!) when all this is over. Sending you lots of love x

@TwoBigNoisyBoys

Good news about the PCR *@MissSmiley*. Sorry to hear you were feeling low after the will-signing etc. Our emotions are all over the place aren’t they, it’s hard to negotiate our way through them. A new garden and driveway sound fab, how lovely of your mum! My dad does a lot of little treats for me, I think it’s their way of doing something, anything, to help. Try to visualise yourself recuperating in that lovely new garden with a pot of tea/glass of wine/massive gin, (whatever floats your boat!) when all this is over. Sending you lots of love x

I'm already googling comfortable sun loungers 🤞

Hope it all goes OK on Monday MissSmiley Always good to have a surgeon who knows what they are doing. Let us know when you are out and well enough to tell us. My husband got me a recliner for after my surgeries just from IKEA but its very nice to lie on with my fleece bedding etc in fleece onesie and look to the birds chirping on our thatched roof and the garden but would be good if you can get out in garden too on a recliner.

I have asked for MacMillan counselling TwoNoisyBoys but not heard back, hospital are chasing. I think anything is worth a try, most of the time I feel fine then suddenly I get severely anxious and depressed and its getting through that. Exercise everyday nothing major just 20 mins of leg and arm gentle exercises helps me most of the time. When I am bad thinking this will pass and taking things day by day or thinking I can say no to this helps. But its hard and its such a long treatment programme when they add chemo in on top of radio and surgeries and then 10 years hormone treatment. Sometimes I find the daily positive posts a bit difficult on cancer sites, I need to set up my own one with a daily moan and scare of the day post.

Next appointment on Monday but by video, first one with oncology, no idea how the video works either.

Hope you get seen soon MrsPNut.

Your adventure sounds exciting Top

We are off to Scotland on Wednesday to enjoy the fine weather of hail, sleet, strong winds and rain. At least there is a pool.

@Silkierabbit the positive stuff can really suck sometimes, save that for you real life friends, moan as much as you like here, we completely understand