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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@TopOfTheCliff I had a letter about the extra jab. I think if you were having treatment that affected your immunity at the time of your vaccines then you can have the extra as you may not have had a full response. I had had both of my jabs before treatment started and the booster before I got the letter so it didn't apply to me. We also had covid in the house the week after my radiotherapy finished so I think I would have got it then.

Thanks, Running. Maybe I can take encouragement/inspiration from you so that I might make it further than week 3 of CouchTo5k after my treatment!!

I never even ran for buses before cancer now I love it. It's definitely a coping mechanism but hey it's less destructive and cheaper than heroin !😂

Am aware that I am very lucky but just popping in to say....all clear. At the moment in my trust my nhs appt would be in Jan, the private system is creaking too as had to ring for my results today. Love to you all at this Christmas time.

Hi all. I came on a couple of weeks ago. I now have my diagnosis.

High grade B cell lymphoma, stage 4. Chemotherapy to start next week.

I’m scared.

Sorry, Dammit. It really is shit. Do you have a nurse specialist or someone you you can talk to irl?

So sorry @Dammitthisisshit. I really hope you have a good result from chemo.

I'm scared too. Had a phone call to arrange my appointment today and she said I'll have a scan, internal exam and biopsy. Wasn't expecting the latter so it all feels a lot more real and scary.

Oh, I am so sorry for us all, newly diagnosed, not yet diagnosed and on the treatment path.
But v happy for those of you out the other side, thank you for showing me there can be better waiting out there.

Hope the mammogram went well @TopOfTheCliff! I was more worried about mine than I thought I was, iyswim, but it was wonderful to get a final, proper all-clear. Hoping yours is just as positive. x

Just back from right mastectomy surgery, went fine I think, results in 2 to 3 weeks, probably 3 as Christmas then radiotherapy next, back home as just a day hospital, no drains in, very drowsy but can just about hobble around. All my obs were ok. They and breast centre are closed for weekend but I have a phone number for issues over weekend. No painkillers given for taking home just told to take ibruprofen and paracetomol, do arm exersises and put non wired bra on after 24 hours. Can shallow bath from Sunday and shower from 7 days. Had trouble waking me up from general but I am always like that and had warned them but they work such long days, 12 hours plus DH was late so poor nurse worked 13 hours with me not waking up and dh. She was the loveliest nurse and the female surgeon was lovely, I hope I see her again not mine. They operated mid afternoon so chatted to the other breast cancer patient. Not in much pain atm and can move arm fine. DH made me cheese and biscuits, I got 3 ginger biscuits, 2 squashes and 1 tea in hospital.

I’m glad you are feeling relatively comfortable Silkie, take it easy as you can and good on DH for the cheese and biscuits, that sounds just the thing.
I have been awake since 3, trying to work out how to get booster without having to stand which I really don’t think I can do for long just now. Will try number again when it is a reasonable time this am. Am really trying to get my head around all the implications of my treatment, eg dental work needing done before bone thickening drug, having to inject myself, having to have blood tests every 3 weeks, losing my hair, insomnia yay exhaustion, etc etc. my sister told me I was getting the ‘gold dtandard’ treatment. I hope it’s worth it. My DH had marvellous treatment but died anyway. Also the ramping up of Omicron is scaring me, I’d hate to get half way through stuff and then be in limbo.
Oh, I hear myself and what a whiny person I sound, but I just can’t talk to anyone in real life because everyone feels they need to encourage me or make it better and I end up trying to reassure them. I know I could speak to Maggie’s Centre but I feel strange doing that as I went there when DH was I’ll and I just can’t see myself speaking to them again from the other side as it were. I can’t explain why, it just feels too hard.

I have to get dental work too and keep having to postpone it. I have booked booster for early January as not sure will be up to it before than and last one was in July and can isolate apart from hospital. I dont know if you contact gp they could arrange something easier. I think certain times are less busy as well, I have always got in pretty quickly and do mid afternoon but may vary by centre and may be a rush atm. Re treatment could you explain situation to clinic again and see if they have suggestions. MacMillan do counselling over the phone if that would help.

@Podgedodge not whiny at all. I definitely would contact GP and clinic and see if they can do something to help get your booster more easily. The experience of your dh's illness and treatment can't help but weigh on you - so sorry about that. Somehow you have to keep hold of the fact that your situation is different and your outcome is likely to be different. I nursed both my parents at home with cancer within two years' of each other and they both died. I know what you mean about not wanting to talk to Maggie's. I remember going out for bread and milk when the Macmillan nurse came on Xmas eve. Just the word Macmillan practically give me hives. If not Maggies - maybe a different charity. Take it one week at a time. Once you are in a treatment plan it's less likely to be disrupted - my chemo was though the lockdown last winter. I remember one time being the only patient walking through the huge hospital - but there were no delays.

@AlbertCampion and a very happy Xmas to you too my campion. Good news on the mammo - onwards and upwards!

@Podgedodge One day and one thing at a time and keep things focused in the short term and showing up, putting one foot in front of the other each day. Acinonyx is right - cancer is so individual and personal and yours is all your own and completely different from your husbands,though I can understand the apprehension that situation must have caused.

As for mental help - take that at your own time too. It took me 18 months before I decided I really needed to talk to someone about the anger and grief. I was also offered Maggies initially but before I was strong enough to get there it was closed due to the pandemic. In a way I think that may have worked out better as I was able to focus on getting the hang of treatment and CancerLand. In the end I worked with a private therapist and it helped immensely.

I rang my consultant last week and was told that the repeat blood test was fine. Huge sigh of relief. Today, however, is the 5th anniversary of me finding a tiny lump in my right breast. Tiny, tiny, pea-sized bastard. So today’s date threw me mentally. I keep replaying the initial diagnosis in my head, then on top of that keep replaying recurrence diagnosis that happened 18 months ago. Analysing every word, what it meant, what it still means, etc. I have signed up for a post treatment course run at Maggie’s - the course is run by my clinical psychologist (in February). I just can’t seem to turn a corner mentally. I have really been fecked up mentally by the whole experience.

On top of it all I have been really fretting re: Omicron and NHS imploding. I want all other NHS services to be available, especially oncology, of course, should I ever need them again. I had my recurrence in the middle of 2020 lockdown with no delays or cancellations, thankfully, but still, it is causing me a great deal of stress just thinking about the current Omicron implications.

Sending peaceful vibes (I sound like a right hippy there ), strength and lots of love and additional courage. Thinking of you all every day, I really am.

I will probably be still lurking around because my head is still all over the place.

@TopOfTheCliff I have been thinking of doing something physical to fundraise for Maggie’s but I don’t feel (mentally) ready just yet.

@Podgedodge I volunteer at our vaccine clinic, and we have wheelchairs that we can take out to cars to help people in - and you can stay in them all the way through. That might help?

@Wellwhatalovelyday, thank you, I have managed to book a booster with a given time on 27th. I hope that’s ok, it’s the best I feel I can do, although I’m entitled to free flu vaccine, I’m going to pay for one as I don’t want jag in my right arm, cos of fear of lymphoedema. My cat bit me on that arm last night and drew blood and I have a massive dressing on it now.😀😀
I also had dental work postponed because of DHs hospitalisation then my diagnosis. Snotty oncologist said had to be done before second round of chem. have emailed dentist asking for advice. It’s a new dentist cos our old one went private in lockdown, so I now have to drive there. Fingers crossed it will all be ok.
@balkanscot
I hope the turmoil eases soon, it’s very much the hidden aspect of all this stuff isn’t it, you’re supposed to be happy it’s all over but there is a massive emotional amount to be dealt with.

Sorry to trespass on your situation, Podge, but is there something about dental treatment and chemo..? Can you not have treatment during?

On the second stage of my chemo I have to have some bone thickening drug (I think that’s what it is) cos chemo may have links to osteoporosis (?) . If there is dental work needs doing this can cause the bone to harden around the bad tooth and cause problems.
At least that is my takeaway from the meeting. 🤷‍♀️ Sorry to be so vague, am going to clarify with nurse tomorrow I hope, will update.

@Podgedodge I’m sure there will be people who can fast track you - just make sure you ask!

@Podgedodge @MrsWooster It's Zolendronic acid (Zometa) and for breast cancer is usually given alongside long term anastrozole/letrozole because they effect of them inhibiting oestrogen is decreased bone density and early onset of osteoporosis. The zometa strengthens the bones massively. There is a possible side effect of necrosis of the jaw and that is why some dental work is not advised. www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/zoledronic-acid My oncologist has said that after radiotherapy, I am due to go for jaw x rays and to see a MaxFax consultant to decide if I will be affected by the side effects before I have the infusions.

And please do use this thread to whinge, cry, shout etc, we have all been there and I've found that only people who have had cancer understand how shitty it is to have cancer.

@TopOfTheCliff I had radiotherapy before for my other cancer, at least this time my bladder doesn't have to be at exactly the right level of full and I won't have to have 25 sessions.

Thank you @MrsPnut, that makes much more sense than what was in my head.🙂

Hi all,

I am 37 and was diagnosed with triple negative bc in May this year. Luckily I found the lump early and have been treated with chemo and lumpectomy. I am due to have 10 days radiotherapy in January.
When i was diagnosed i had been on the everyday pill for just short of a month and previously has been on Microgynon for 15 years (2 dc in between). Now 8 weeks has passed since my last chemo session my period has returned but i am shit scared what to do with regards to contraception. I'm scared to go on the pill again as it's apparently linked to breast cancer especially for my age. Scared to take injection because of how much weight i put on when i took it 18 years ago - i'm already 'over weight'.
I'm interested to know what others are using. Ideally i'd like my partner to get the snip but he isn't very open to the idea.
Thanks I've rambled on enough x

Hi @Beck01 welcome, usually oncologists recommend a copper coil as birth control post breast cancer just because of the lack of hormones.