Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join 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.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Can I ask if any of you have done counselling? Im in a bad place at the moment and wonder whether to give it another go. The first time I tried it I found the counsellor really uninterested, tried again, made a phone appointment and no one contacted me ! No apology. I suppose really no one can alter things, I need somewhere to offload my head. Its so hard going through everything alone and having no one to talk to and make you a cup of tea in the night when you are in fear. Anyone found it helped, have I just got to find the right counsellor

I'm having counselling, I was already having it for childhood trauma, so had a good relationship with my therapist. I've had lots of therapy before, but I've felt that she's the first person that "gets it" so I think it is a matter of trying until you find someone that suits you. I'm single and although I have a couple of very good friends who live close and have been fabulous, it's not the same as having a (supportive) partner going through it with you.

I had counseling. But I’d also had it a few times over the years due to childhood trauma. Then again when my decades old marriage broke up. This time however it was specific counseling for someone having to face or live with serious or life changing illness and my counselor was a psychiatrist who specialized in women's health. I saw her initially in hospital on our version of the NHS when I had the breakdown the day this all started but I then continued to see her privately once home. It did help me but the truth is that this thread has helped me more. It’s just nice being amongst women who understand and Im braver now than I ever was even though Im still scared.

In the past when I’ve had counseling I can’t really say it helped very much there and then because my head and my heart were so out of sync but it did help me later when I was more in sync with myself and I could then think about things and make sense of so much.

Would one of the cancer specific charities who run counseling services be of any help to you. And I know this suggestion may seem ridiculous but the Samaritan’s are there for everyone who is scared and worried and are only ever a phone call away night and day.

I wish there was more we could do to help you, even if it was just a coffee on a bad day.

@thereisonlyoneofme I've put myself forward for counselling, a local cancer charity offers 12 sessions, there was a waiting list and I'm still waiting now but in the meantime I accessed some through my employers assistance programme, is this available to you at all?

I've found it quite useful as I've not told many friends when I've been low as I don't want the pity and I don't want to be known as as "Oh yes, the May Move with cancer."

It's not defining me.

No one gets out of live alive anyway, but I'm not going to be living half a life letting this fucker throw a shadow over it. It's led to a few "You're being selfish." type conversations from people but Yes I absolutely am! My life after all.

Lovely cat Great Glad you got a kitten and he is bringing you joy. We all love Mr Floof, he is growing at a rapid rate, was very happy here today when had the cleaners in for a one-off clean (4th one since chemo started and I so recommend these esp if you have kids and spare cash) and they were telling him he was the most beautiful cat they had ever seen and he was rolling over and doing poses for them.

I had counselling via Macmillan / BUPA, 6 sessions and the lady gave me 1 extra free, it was mainly just chatting about my week and was useful but did not really solve anything but then you can only treat cancer not really solve it by talking about it. But was nice to have an hour chat and sympathy each week. Depends who you get though. Its worth a try. I also signed up for NHS one but that has been several months and then got 1 call off a lady who was like tell me what you are stressed about, but why does that make you stressed, why, argh not sure if she was very young or something but gone on the list for a different one. I actually prefer the charity which gives you trips out though, but then its back to reality but it gets you through. Mr Floof is the best thing so far.

Am getting chemo brained a bit which is annoying and hope it does not last too long / permanent, I forgot I had a cat on holiday and wondered why I had hundreds of photos of an adorable cat on the phone though happy when 30 mins later I realised all the beautiful cat photos were my cat. 😂

Radio starts on Thursday. Then just hormone tablets and breast reconstruction after that. Not sure what reconstruction or if implants, know nothing other than long wait. Meds I think they are doing Tamoxifen.

Welcome May

Love to everyone.

The first counsellor I had was through Macmillan, not really helpful., Anywhere else seems to have very long waits. I hadnt thought of the Samaritans, but really someone with an insight into cancer would be best I think. Maybe should write it all down on a bit of paper and burn it

I had counselling last summer for 10 sessions, paid for by insurance. I found a therapist who a) had had bc herself and b) was a good fit for what I wanted to discuss. It helped a lot to process some really deep emotional things I had squashed down for a long time and let them go.

Just tested positive this morning for Covid weee! Had a scratchy throat and sinusy feeling since late Thursday, but no positive test until this morning. Blaming it on my office visit on Tuesday - way more people than I expected, a bunch of people coughing, there was an outbreak ten days ago amongst senior leadership, and the toilets were an absolute state. Feel fine otherwise, I thought it was allergies or a head cold. Unfortunately tomorrow is my monthly MO visit so that will have to be adjusted, which is a pain.

Thereisonlyoneofme, I found this service on the Target website which also has a phone service you can call even for a chat. Its a link to an organization that will team you up with professionals in your area that deal with specific problems. And if I recall correctly we used the psychiatrists version of this kind of website to access a Dr For my son for when we are in the UK. It teamed us up with a really good one that we used for about 7 years before my son became unable to travel.

www.psychotherapy.org.uk/

also there’s Ovacome that may be able to point you in the right direction of help as they also have a phone service.

Regarding the Samaritans - they would just listen and let you say what you have to say. A listening ear till you can access other help.

I don’t know if you’re a huggy person or not but I just want you to know that I’m thinking of you and sending love across the miles.

Does anyone have any advice on filling in the ESA work capability form? I have been sent one after applying for it but I’m not sure what kind of things it wants me to say! Obviously I’m not working right now due to the recent surgery and chemo starting in 11 days but what does it want to know? I feel quite well right now, if tired, so I don’t know what to say!

@AGreatUsername ive no idea about the ESA but I can recall that friends living in the Uk who were claiming benefits for their children who are on the spectrum ALWAYS described the worst days on any official paperwork.

@AGreatUsername There is a question about cancer, ticking that box means you don’t need to fill in the rest of the questions. You just need your link nurse or one of the chemo nurses to sign the form at the back.

@MrsPnut I’ve just seen that! Great news, no box filling. I’ll pop it in my back for when I go to the oncologist next week.

@thereisonlyoneofme I'm so sorry to hear that you're struggling, I'm single and living with cancer just highlights that for me. I'm worse in the evening and at night too. I have good friends who I can unload to but I do try and limit my moaning. I had a massive panic attack a month ago around the time of my review, I phoned the GP the next morning and both my preferred ones were off so I spoke to a very kind female GP who really didn't get it and thought I would benefit from CBT. I told her that I've had CBT previously and didn't find it that helpful. I wanted to say that no amount of filling in silly sheets with 'alternative thoughts' can take away the reality that I have incurable cancer and no-one can give me what I want which is a clean bill of health with no more appointments. I agree, you have to live in Cancerland to understand Xxx

@Fantasea I feel exactly the same. I dont have any relatives and my friends are lovely but you dont want to spend time with them moaning about your illness. Its hard enough dealing with this without having to do every appointment etc. on your own, and yes, the evenings and nights are the worst. The odd occasion I do go out somewhere its a few hours when you are not focussed on the disease. I stupidly read an article in the paper this morning about the state of palliative care which has not helped my mental state either!

@MrsWooster how are you? I’m not sure what day clinic this week is for you but wanted you to know I’m sending you my thoughts and best wishes.

Thanks, GreatUser
Technically clinic’s due Friday but I’ve actually been in hospital for a week now, after an abortive pleural drain which finished up with the drain falling out onto the ward floor! They’ve now admitted that, as I said, it’s actually abdominal ascites that needs draining but I’ve been waiting a week for it-taking up a perfectly good hospital bed while feeling like Mr Creosote. Drain is now going to happen tomorrow, then more chemo, asap -to be discussed whether on in or outpatient basis.

It’s safe to say it’s not been the summer holiday we’d planned.

Oh gosh what a nightmare! So you didn’t need the pleural drain after all? How annoying. I had an ascitic drain and felt much better after it (but strangely weak and pathetic for a good week). Hopefully you’ll be more comfortable then and ready for chemo.

I definitely needed it, but proportionately less than the ascites. Thé said they couldn’t see enough to drain-but they said that last time and got 4 litres off, so I must be made of adamantium, impervious to all scan rays. I’m slightly sceptical about u/s scans also because this time the very nice consultant was guiding me as to what was on the screen and said “there’s your uterus…” After an awkward silence as we both looked at my midline incision scar, I said “ I haven’t got a uterus…?” at which point it got worse when he said hopefully “ do you have any ovaries? No? Perhaps that’s ligaments”. I felt a proper heel.

I'm starting chemo today. Feeling pretty resentful as I feel bounced into it because the hospital made mistakes and it's not clear I need it but I'm running out of time and I don't think can live with feeling I might have made a mistake if the cancer comes back. I'm going to try to cold cap even though it's a long infusion (paclitaxel and carboplatin 3-weekly) as some women seem to have managed this, though results on the while aren't as good for the shorter treatments. I've done lots of stuff to prepare my body for it, so we'll just have to see.

I'm taking a week or so off then will try to do some work at home and online. How do people cope with the "how are you?" question with random acquaintances when you don't want to tell them about the cancer? I know it's my business and I can tell anyone I want, but it also feels like lying to miss it out. Honestly though I am so fed up of answering people's questions however well meaning they are.

Oh my goodness that made me laugh. Dr “I don’t know what the fuck I’m looking at here, wonder if she’s noticed”

Good luck with the drain! I was also told I didn’t have enough to warrant a drain but I pushed as they were going in for a biopsy anyway and they were amazed when 3L came off!

@MrsWooster being stuck in hospital is not fun, but I did have to smile at the 'anatomy lesson' you received and the ladies parts guessing game. And was this the radiologist, like the doctor trained in this stuff? Some days if feeling generous I can give boneheaded things like this a pass - I mean, havent we all blurted out dumb things at work? Doctors arent perfect, but you would hope they would have at least read your notes beforehand or I don't know, noticed the large scar while doing the u/s?

@SierraSapphire before my final staging was confirmed I had to tell a few people at work and I was not comfortable doing that at all - and in fact, my boss and her boss were practically pushing me to announce it to the entire team of 40. I never updated anyone with my final staging because a) the first experience had already been bad enough and b) I HATED the ongoing questions about 'oh how are you?' and then the 15 minutes of 'oh have you tried this? oh you should do that' and none of it applied at all to my situation.

I work to get away from cancer, not listen to yet another person's opinion on my body and my disease, and part of it includes jealously guarding access to information about my personal life. THAT is one of the few things I can control in this shitshow. Think of it this way - there are probably things going on in the other person's life that they aren't sharing with you so... why is it lying by omission?

Turned up for chemo and they'd made a mistake and didn't have the drugs prepared and I have to go back next week. I'm beyond furious and upset because there's now been seven weeks of delays in total because of incompetence / mistakes. Is it this bad everywhere?

@SierraSapphire agh the how are you stuff is the worst; extra bad if followed by a head tilt. The majority of my hair is gone now so there’s not much hiding it plus I can’t be arsed to cover up my picc line; it’s bloody hot; I’m wearing what I like. My daughter is starting primary school, which seems to require a great deal of parental involvement, & is always at bloody birthday parties, etc. I just rashly told everyone on a WhatsApp group for the school I had cancer. I give up.

I don’t give out information about how exactly I am, what sort of cancer I have, or its stage. If anyone asks me I just say “ok considering!” brightly because frankly if I’m out of the house I am ok. You don’t see me when I’m not ok. If people offer to help I actually take them up on it if it’s specific eg look after daughter (known friends!); lift to chemo etc. If they message you : you don’t have to reply!!! You control it. Just ignore them if you don’t feel like relying. ESPECIALLY if they’re random acquaintances.

I've honestly and sadly found most people run a mile anyway.

@MrsWooster haha yet oh dear. Whenever I have scans in that area I mention helpfully I haven’t got any ovaries as I can see them looking in vain for them. Last time the radiographer looked grateful.