Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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@AGreatUsername totally get the bad mood feeling. I absolutely hit the roof with my poor DH the other day because he said he feels sorry for my mum who is in a care home (unhappily) and I haven’t been able to visit because they were closed due to an extended covid outbreak and then I got so unwell from my chemo. I yelled so loudly at him that I didn’t want to hear about how lonely mum is because nobody worries about how lonely I am. Of course he does care and does his best but many of my friends have been very weak reeds to lean on. It also made me realise I am holding onto some resentment because I was busy looking after my mum and neglected my own health, and if I’d gone to the Dr earlier I might have been able to avoid chemo. I think I might need to seek some counselling to unpack all that!

@Scandimandy i had chemo before surgery based on 2 factors, the fact it was triple negative and the size of the tumour (I was just over the size where they do chemo to shrink it first).

@lucysmam todays Sea Soul Journey oracle card is appropriately Gratitude. It chimes in nicely with our chat last night about appreciating small things like a nice coffee and warm cheese scone or a light rain shower watering my veg patch.

I also feel I sacrificed my own health for my DPs @Remaker - DF died at 89 and DM still alive at 90. Both refused care even though I said I wasn't coping and to my DM I was scared my cancer would come back due to stress / tiredness and effect on my immune system. I feel resentful but I've also stepped back, psychiatrist Gabor Mate writing about trauma and effect on the body says it's better to choose guilt over resentment!

@SierraSapphire thank you. I had to wait 4 months for chemo to start following the discovery of my ovarian tumour and this was put down to Covid. It's so hard having to worry about potential treatment being delayed due to staff shortages, it's been on my mind the whole time. I hear you and @Remaker on caring for elderly parents - my DM is nearly 89 and has no time or patience for my ongoing issues (a whole other thread) and is fighting (literally) fit.

Four months is awful @Fantasea - that must have been incredibly difficult. My DM had two A&E admissions during my chemo. Once we had to call the fire brigade to break in, and the other she was ill all day but instead of calling an ambulance she waited for me to get back from my chemo session and called me. I was really worried about getting an infection in A&E with her, but the staff said that if I left her alone, then there would be nobody to help her to the toilet or anything like that it was awful. I don't know whether her cognitive decline means she's just not getting it.

@TopOfTheCliff that's very appropriate 😊

Can I come in? I've been reading and avoiding posting till I knew what was going on because I feel like an idiot posting in a cancer support thread when I don't even have a diagnosis, but I'm beginning to feel like I might never be diagnosed with anything.

4 months ago I had a ct scan come back with a suggestion of possible lymphoma. Since then I've had multiple scans, many blood tests, 2ww referrals to two other departments, surgery which couldn't be completed, and I still don't know what's wrong with me. I'm waiting for histology results to come back (been two weeks so far so I'm banking on another two weeks for those) and 3 weeks to hear from the latest dept. I've had a 2ww referral to.

The waiting just seems never ending and it's honestly getting me down a bit right now. How can I avoid a total sense of humour failure?

Thank you for the solidarity @Fantasea and @SierraSapphire but I’m sorry you’re also experiencing this. My mother is almost 88 and had very firmly settled into the role of dependent with me as carer. I know she resents my illness because I am not available for her. I am learning many lessons about how not to treat my own children as I age.

@MyNamesGaryAndImAddictedToChips welcome to the thread. I don’t think you have to keep a sense of humour under the circumstances. It’s natural to feel down especially when the diagnosis is being dragged out and you’re not getting answers. I hope the situation becomes clearer very soon.

@MyNamesGaryAndImAddictedToChips welcome and this is just the right place for you. We all understand the torment of waiting for results and diagnosis and a treatment plan. Four months must be unbearable! You are allowed to feel down and scared. I found the Calm App helped me but some have asked the GP for help with anxiety medication.

@SierraSapphire that is awful that the nurse used blackmail to get you to stay right after chemotherapy. I usually just crashed out into bed afterwards so no way could I have been useful in A and E. I have a DM89 who is quite well although she keeps wishing she had cancer instead of me. (NO MUM it would kill you and I am dealing with it just fine.) My FIL and MIL are 90 and FIL has dementia so I do a lot for them. Shopping, laundry and taking MIL out for coffee. I don't mind but it's a bit annoying that her own DC leave it to me.If I was really unwell I would have to stop and let them do it.

Eventually @TopOfTheCliff I sat on the floor in the corridor by the nurses station and cried and someone finally took pity on me and said they'd find a chair for my DM to sit near them and keep an eye on her, but it's unbelievable they have no system to keep an eye on an 89 year old woman in the waiting room who can't walk independently and needs the toilet. I still always feel terrible when I leave my DM, but before cancer I would have stayed all night regardless of the impact on me. That's maybe doable when its occasional, but it's been monthly or even less at times.

@SierraSapphire I totally understand. FIL collapse and spent 24 hours in A and E and nobody fed him. He ate three meals worth when we sprung him out of there

@SierraSapphire your experience in A&E is appalling. My DM recently had a fall and I thought she needed an X-ray. So much of my anxiety was around my inability to be in A&E due to being on chemo so I really feel for you.

@Remaker you've summed it up - mine resents me because I'm not readily available and also when I am, I have to take precautions. I too have learnt so much from her on how not to treat my own adult DD. I've lived in Cancerland over 3 years now and have managed to develop a thicker skin around her 'displeasure'.

@MyNamesGaryAndImAddictedToChips welcome to our lovely thread and so sorry you find yourself here. We all understand the agony of waiting and the frustration of being passed around different departments. I've been on beta blockers from the GP since my troubles began and they do help. They don't stop the thoughts but they do take the edge off.

Hi @MyNamesGaryAndImAddictedToChips 👋 So sorry to see you've been waiting so long for answers, and passed around so many departments too. Hopefully someone can give you answers soon!

We've been in just under an hour & dd2 has turned into motormouth since we left 🤣 Talk about speed talking. The girls have just headed for a Maccys so I'm going up for a long, scrubby, shower & then may try the wash in/wash out hair colour I picked up in town...it has less ingredients than a bottle of shampoo so fingers crossed it's ok - I can't see it not being but we'll see 🤔

@MyNamesGaryAndImAddictedToChips welcome. Sorry you are being given the run around. Those timescales sound very unacceptable. I think it's reasonable to chase and find out exactly when histology will be back (takes around 2 weeks where I am) and to try and find out who the result will be going to and when they will be discussed. You kind of need to feel reassured that someone is responsible for you and nothing is being overlooked. Waiting is super hard but having some idea of what to expect definitely makes it a bit more bearable.

Aaaagh frigging travel insurance. Oncologist happy for me to go away on 20th. Rang existing insurers who Is already declared the breast cancer to, to add on this new one and they said because there are not 6 clear weeks between my diagnosis and departure, they can't cover me. This is totally crazy as I'm not having any more investigations, my chemo plan will be in place once I've decided which to go for and my doctor is happy for me to travel. That was Insurance With, who are recommended by Macmillan. I've had one quote for £3k, or £2.5k if I just go for medical cover with another company but then there was some confusion over exactly what kind of tumour I have as mine is super rare and all their bloody questions are yes/no with no room for variation or nuance. I've got the details of a whole load more but it's so time consuming calling them and I now have to wait until Monday and desperately try to get hold of someone at the hospital to confirm the tumour type.

Sorry for that outpouring. Just really want to go on holiday withy boys whilst I am still well enough to enjoy it and "computer says no" gives me the effing rage.

@Silkierabbit your advice below is really encouraging

Re menopause symptoms chemo put me in menopause, and my memory went bad in it but now a year on with also doing some research of topics to keep brain active its almost back to before, I just sometimes suddenly get like brain freeze at times but then a minute later its back. I don't take anything partly as on Tamoxifen and some anti-depressants interfere with but there are a few you can take if given that and you want one. I swim a lot which I find hugely helpful for mental and physical health, around 3 miles a week, any exercise will do the same but at least 20 minutes each time for the mental health and ideal is 3 to 5 hours for physical health but any is better than none.

Does dog walking count? I try to go fast. She gets annoyed if I don't; she likes to keep a good trot pace! It's anything between 5.5 to 9 hours a week. She refuses to go to the loo in the back garden (which suits us as it's not big) so it's x 3 a day or more, bar my 2 work days.

I am intending to also drop in some more swimming (I think one session but try for 2) and some Pilates. I'm also working on some physio/ weight routines at home I can drop in at bedtime or in the morning. Two children, one only just 5 doesn't make it very easy.

Ideally I'd try and get some aerobic gym sessions in but it's not realistic or sustainable. I do have some online access aerobic things I have done at home before though.

Also; I suddenly thought that swimming often makes me dry doon there and this will be worse without hrt and on tamoxifen. Any tips there?!

I can't tell you how great it is just to have someone say, oh yeah, we understand that!! I can't really talk to anyone about this IRL. DH is, understandably, worried but boxing it all up for now. My adult kids are either being very zen-like or doing a good impression of it. I hope it's the former, I don't want them beside themselves. DM is just furious every time anything (appointment, results etc.) takes longer than a week. 😆

I was told by the haematology consultant to expect 4 weeks for histology and anything quicker would be a bonus. The Macmillan nurse I saw for preadmission said the same. The results are going to the gynae-oncology consultant.

As for the colorectal guys, who I'm still waiting to hear from about my 2ww referral, I wonder if they're waiting to hear about the histology too. Not sure what they could do, or arrange in the meantime. I have already had a FIT test and a colonoscopy just before Christmas, and recent CT, MRI, and PET scans.

Thank you all for replying to me, and for the welcome, btw.

Yes dog walking would count, I think its 3 to 5 hours of moderate activity so probably faster dog walking or if slow might need to go over (sometimes they seem to double times for slow) that but sounds like you are doing that anyway. I always bathe/shower after swimming to get rid of chlorine, it can dry skin out I find, sometimes I moisturise as well.

@MyNamesGaryAndImAddictedToChips Ugh that's an AWFUL wait!!! I went slightly mad waiting for my initial test results. Although got away lightly during the 2 week referral because it didn't even occur to me that anything would actually be wrong. Ignorance was bliss 🤣
Do you work/ can that help distract you? I found work both a blessing and a curse, needed it but struggled to focus. Timer apps were my friend in helping me to get my brain in gear for short periods. I hope it's quicker than you're expecting though. 💐

@Scandimandy I was also surgery first, and again it's because they thought mine was small. My original plan was lumpectomy plus lymph clearance, then radio for the rest of the breast, then chemo in case anything had spread elsewhere from the lymph nodes, then hormone therapy. That's been chucked out the window now 🤣 but I don't think surgery first is uncommon.

@lucysmam hope the dye job went well! What colour & are you pleased with it?

I feel a bit guilty bitching about this because I'm lucky to have a sweet sympathetic MIL, but AIBU for basically not wanting to talk to her?? She lives far away and we've only had one phone call since I was diagnosed, she listed everyone she knows who's recovered from cancer (she had BC herself) and then gushed about how I'm bound to recover and how wonderful and strong I am. It grated on me so much, I just didn't want to hear that. Also she interrupts for England so it's hard to actually tell her stuff anyway!! I feel mean but she's just not in my circle of people I want to talk to this about, and DH is happy to update her for me. She knows I'm back driving, back at work etc and I feel like the guilt tripping texts I'm getting are more about her emotional benefit than mine. I suspect I'm being a bit of a shit DIL here for not being more grateful that she worries about me and wants to support me/us and I should just put up with a few more gushing phone calls 😫

Reading through the thread it seems like there are a lot of people waiting for test results / decisions this week. Hope everyone has prompt on-time answers and, obviously, good results!!

@AllotmentTime erm...well...it was a pink Bleach London 3 washes one but it's taken more on my head than hair 🤣so now I look ever so slightly sunburned 🙄 I've just looked in the mirror and actually do think it's taken on the grey but the hair's not dense enough atm to see it properly so I'll try again in a few weeks. At least it didn't make the bit of hair I do have fall out though!

@AllotmentTime I might be selfish but I’ve decided if there’s one time in your life you can put your own needs first, it’s when you’re dealing with cancer and treatment. Some people are just hopeless or they can’t give you what you need and make it all about them. My best friend just kept chiming in with what had happened to her dad/uncle/2nd cousin, none of whom even had the same cancer as me! I’ve just had to distance myself and not rely on her for support. Which sucks but she was making things worse instead of better.

Im having a strange day as well. I know that if I get in the shower I will feel a thousand times better but I just cant be bothered. I didnt wake up til 1300 which happens once a week when im on chemo. All Ive done since is eat fruit and nut (the Aldi one is best) and drink strong coffee whilst lying horizontal. I love how active you all are and feel I must be doing something wromg? I go out walking most days. I have a graduation on Tuesday then last chemo Wednesday so I will be busy next week. What then? Im terrified. The scan will be two weeks after.

For those talking about waiting times. It seemed long for me exactly three months from diagnosis before chemo started. That was fillied almost daily with scans and tests. I dont think they couldve gone any quicker tbh. Ive been lucky that Ive had amazing care. Very unlucky that they cant find the primary though☹️