Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Thank you all for being here and for answering questions, really appreciate it.

I am so angry.
I don’t suppose it’s directly cancer related.
My DD is trying to get to University and it feels to me that the school, who should be so massively supportive of her are just dismissing her life experience over the last 18 months.
She is 17. Since July 2021 she has lost her Father, both grandfathers, a loved cat, watched me undergo 2 surgeries, chemo and radio, all the while being at school full time, sitting her Highers and holding down a part time job.
I am biaised, but isn’t that a hell of a lot for a 17 year old to deal with? Shouldn’t she be given a little leeway as to her results? They are just sort of saying, yeah yeah, we get she’s gone through a lot but you know, tough world out there…
It is just really getting to me, everything has to be a bloody battle all the time.
Oh, and to go abroad with prescribed gabapentin means I need a Drs permission letter which is £29.
I’m done, really have no fight left.

Yes, that is really shit for your daughter @Podgedodge - but then I think schools can be really shit places for any kids going through adversity or dealing with trauma. It shouldn't have to be the case, but if things don't go to plan for her educationally, there are many other ways that young people can find their way in the world. I home educated my DD for part of year eight and all of year nine because of issues with her mental health and it opened up to me a world of kids who have not done things conventionally, but still had achieved and were happy. My DD went back to do her GCSEs and did well, but then dropped out of A-levels again. She's now at uni doing a foundation degree and is loving it. Another of her classmates did her A-levels whilst both parents had cancer and one died, she didn't do as well as she would've done otherwise that has decided to work and travel for a bit and is getting on really well in the circumstances. It is really infuriating that systems don't cope well with this sort of thing, it's important for kids to know that it isn't their fault and it's the school that's being crap and at them. Hopefully admissions officers will be more sympathetic, it may be worth posting on the higher education board. If you haven't done so already, lots of knowledgeable people there

Thank you @SierraSapphire .
I’ll probably try that in a bit.
might be better if I calm down first, but I really appreciate your reply💐

I'm so sorry for what you and your DD are going through @Podgedodge. I've worked as an exams officer and had to apply for special consideration for students who have taken exams under the most distressing circumstances. The most they can be given is an extra 5% added to their mark ,which is shocking really. It does seem to be the attitude that you just have to cope, even when you can't!

@corlan , do you know what, an extra 5% added to her Higher History would have given her an A and made all the difference. But the appeal was refused, I think because it went through with a load of others.Even though she got a high A in her prelim.
Its me complaining, not her, she really is just getting on with it while I am annoying everyone and I’m sure they just dismiss me as an over entitled mother.

That's awful then. I'm in England, so it will be a different system. Your DD did incredibly well though , it's a shame she didn't get the extra support from the school she needed.

Sorry for what you and your DD are going through Podge I'm in England but two things we have found that help slightly are special consideration but it was applied for in advance and added 4%, school said we would not qualify as cancer was a long term illness but I contacted the JCQ? (whoever makes the rules) and they said we would if pastoral care at school could say it had affected her. There were absolutely stupid rules around timing though.

Another thing is if school sign your daughter up for young carers (this requires her to do no caring, mine does none) this gets guaranteed interviews and special consideration at some universities my DD said. I think university websites would have details of what it gives. I think she said Bristol have a guaranteed interview. I'm not sure if they made up some caring to get it but it seemed very easy to get.

May be different but for Tamoxifen I just took the hospital letter of my treatment plan which included it when we went abroad, no-one even checked.

I'm so sorry to hear this @Podgedodge . My older DD is doing A levels and uni applications at the moment and I worry about how my illness is affecting her. Your circumstances sound harder than mine, so it must be really tough, and I'm sorry that school haven't been supportive. It might sound hollow, but I genuinely do know lots of happy and successful people who came to their careers late, or took a second chance at study later on in life. So I really try and big up the idea that there's never just one shot at opportunity, and there's always a second chance. But it must be very frustrating if you feel that she could have had this chance with a bit more support from school. Sending sympathy your way.

Thanks for the replies to my message @dotty2 and @ajandjjmum, I appreciate your calming words! Whatever happens at least I’ll know a little more come next Friday and will have to deal with whatever that brings. I’m so sorry to hear about your DD’s school @Podgedodge. They really need to be more empathetic.

I’m new here and massively struggling. I’m at a loss what to do and just don’t know how to get through the next few weeks.
I was told on Weds that I had breast cancer after having a biopsy on 3 suspicious lumps. They haven’t waited for the results to come through to tell me they are cancerous. One large one in the breast which is fixed (the consultant told the student) and another one above it. The final one in the lymph nodes.
I have to go back this Friday 23rd for results. However, from that information alone I know how serious it is. I’ve two small children and just wondering how to get through Christmas.
I’m constantly symptom spotting…shortness of breath…a bad back…I need to know if it’s spread. Even after this Friday there will be more waiting to try to get a scan. I can’t bear it.
I’m not eating, sleeping and just a mess. My husband is amazing. I don’t know what else to write except I’m shattered. I’m prepared for a year of gruelling treatment but couldn’t bear it not to see my children grow up.

@Whattodotomorrow Hello, so sorry that you’re here. The period of time you’re in now is the worst, it’s so easy to say but it’s true. This initial total horror and shock does wear off, a little bit at least, and have a treatment plan in place will help you.

There are lots of breast cancer ladies here who can advise, I have ovarian so not quite in the same situation, but mine was also in my lymph nodes so I know how much terror that adds, knowing it could be anywhere. I also have young children and know that fear all too well.

I would recommend calling MacMillan for a chat, or dropping into your local Maggies, who are amazing. No appointment needed for either, I managed fo contain my fear for the most part, but on a few occasions I did a live chat with MacMillan, wrote ALL my rambling worries out in a long rant and even though they can’t offer reassurance it really did help.

These next few weeks will be a terrible time for you, but try and tell yourself that even though it’s Christmas the hospitals don’t take time off and the experts will be planning the best treatment for you. Try and shut away those thoughts and eat and sleep, NOT doing those things will just weaken you and make it worse. The GP can give you something for sleep.

@Whattodotomorrow how you are feeling is completely normal, once you get past the initial shock it does get easier. Like you I was told it was cancer before the biopsy results. Worrying about whether it spread is normal too, my oncologist said you could drop a book on your foot one evening, wake up the following morning with a sore foot and within seconds convince yourself it's random foot cancer.

This is totally true! Every single thing that I feel that isn’t normal I am CONVINCED it’s cancer. Not my usual asthma/too tight jeans etc.

The waiting is the worst. You will feel so much better with a plan.

Agree regarding every random ache you think is something sinister. I found that this stops when you have a treatment plan but then rears it's ugly head again when treatment has finished.

What So sorry to hear you have breast cancer. That is quite similar to mine a year ago, told 12 November, one massive lump in breast, another one found later which was in a lymph node and lots of bone pain, 2 kids and a lovely husband. It was a year of gruelling treatment esp chemo but apart from daily hormone tablets for 10 years and reconstruction surgery in another 3 which is cosmetic only its finished, not at stage 4 and no evidence of disease. I hope you will be able to tell people this time next year you are free of cancer and the chances of that are good with all the treatments available. Of course there is always the risk of reoccurrence so life will never be the same but you can still see your kids grow up and I try not to think about that, dont let cancer take your good days away.

It's very hard but try to take it day by day, it's very normal to think you are about to die and worry about other symptoms. It's always worth getting them checked out but there's a very high chance those will come back clear for stage 4. A bad back would think is unrelated, shortness of breathe could be anxiety, long covid etc. I certainly had shortness of breathe at time and my lung scans showed damage from covid but no cancer. My bone and ct scans showed some bone issues but no spread. The scans are scary but it's very common to fear the worst and its not so bad when you get results.

I found distraction helped a bit, music, trash TV and if you feel up to it any enjoyable activities just grab them when you can, treatment is tough but we still managed lots of min breaks during it and I was out last night at a Christmas party. I got a Maine Coon kitten who helps a lot, he is getting huge and a trilly, cuddly boy. Try and eat if you can, you need all your strength for this, little and often may help. And sleep when you can, my sleep is all over place. Some people get meds from doctors. I had counselling via Macmillan. I got through first stage by pretending it wasn't happening. Not sure it's the healthiest approach but anything that gets you through is worth it.

Hi @Whattodotomorrow so sorry to hear the news but I second advice from @AGreatUsername ad @Silkierabbit

It won't be easy but please try to distract yourself as advised. The waiting is the worst part but when results come back you will have a plan for treatment which can set your mind a little bit at rest.

Sending you virtual hugs.

I got through first stage by pretending it wasn't happening. Not sure it's the healthiest approach but anything that gets you through is worth it

Actually, I did read some research that looked at psychological approaches, and denial did correlate with a reduced risk of recurrence, as did being proactive around steps you can take to reduce your risk. I guess they are both ways that you can try to control your situation.

I was breathless before my diagnosis, I think it was probably lack of iron, which I think is linked to cancer. No breathlessness anymore.

I’ve had my gynae appointment this week. Nothing found. Colonoscopy yesterday. Nothing found . I think skin is the only thing they haven’t looked at. I’m so well but I’m now reading dreadful things about CUPS. Surely they fact they know what type of tumour in my lymph nodes is they can offer some sort of proper treatment?

Hi @KefaloniaKid and welcome to the thread nobody wants to be on. It would be great if your stay was short and I remember being hopeful it was all a mistake. The uncertainty is the worst thing to be honest. Once you know the details you can get your head round it and start planning. @ajandjjmum is wrong because whether you get away with a lumpectomy and radiation or have to go the whole nine yards with chemotherapy and mastectomy you still have The Fear and the uncertainty of living with the diagnosis for the rest of your life.

@dotty2 I do hope your daughter is feeling better. Lots of soup and cuddles I hope.

I’m icing The Cake today with a train set on top. It’s amusing me anyway. I’ve got friends coming for coffee tomorrow so will have to tidy up the house later. Now I remember why I enjoyed lockdown so much! DH is working hard to get my new conservatory finished before the furniture arrives. What a fab Christmas present! He is a star. I’m still in the depths after round 8 but slowly climbing out again. Last filgrastim tonight 😁I don’t really have much conviction that this is the end as I was disappointed before but perhaps I will be luckier from now on.

Sending strength to all
Top x

Wow this thread moved on fast! Sorry to meet you @Whattodotomorrow and I second what the others have said but also DONT GOOGLE! It will be out of date and you will terrify yourself. Just stick to Macmillan, NHS website and Breast Cancer Now which are all sensible and up to date. Unless you have super skills like @SierraSapphire it isn’t worth diving into the research papers (and I say that as a well informed ex GP)

@EachandEveryone sorry you are having such a frightening time waiting to hear what you are up against. Do you have a specialist nurse you can talk to? They should be advocating for you and listening to your fears. Sending hugs x

Top x

Ha ha, thanks @TopOfTheCliff - I do research for a job and I have a Masters in research skills, I wouldn't be able to read them without being trained in statistical analysis, though it feels like a blessing and a curse! Glad you're surviving your chemo, is surgery still planned for you, and if so do you know when?

@EachandEveryone it does seem strange that they can't tell more from the tumour, even if they can't exactly pinpoint it. You would've thought they would at least be able to narrow it down. It sounds very frustrating. Is there any treatment planned at all? One of the things I have learned is that there is far less known about cancer than I would've expected before I got it.

Hello to the new people too, I can also confirm that the early days are the worst. I have just finished chemo for endometrial and ovarian cancer and although I think about cancer a lot still, I am not massively anxious.

On the other hand, I did go out with friends yesterday and they were all talking about the fun and exciting things they've been doing or were going to do felt a bit awkward that I had not much to contribute. I've had no Christmas parties and haven't got any planned. It did make me feel a bit depressed! I'm looking forward to having my daughter home for Christmas, but with my mum's health issues, everything is quite stressful as well. I've got a couple more days working and then off for two weeks though I am partly wondering whether working is taking my mind off things!

They know it’s squamous small cell P16 which should be in my back passage gynae or skin as the secondary is in my groin. What’s frustrating is that it’s one of the ones that responds very well even with secondaries.

Thank you for your kind words. I think my body has just gone into shock and I think I’ve just got to keep busy and distract myself. And stay off Google! The lack of control is really difficult to deal with.
I wish everyone the best and hope everyone has a wonderful Christmas.