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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@thereisonlyoneofme

Ouch! Could you ring the dentist and tell him it's not working. What next?
Perhaps it has to build up?

After 4 days, I decided it wasn't sensitivity and started the rainy-day antibiotics dentist had given me as insurance before an extraction. Still in date and after 4 days out of 7, they finally took effect. So must have been an infection.

Thinking about your Attendance Allowance, I think I'd let it be for a bit. Hard times ahead and it's become progressively more difficult to get. My dm and dmil got theirs, no problem, just living alone and getting older. 10 years later, my poor aunt who needed an inhaler to walk to the bathroom to clean her teeth - angina, had hers turned down. I appealed on her behalf and she was awarded it, but died only a few weeks later.

This is the sort of benefit that gets nibbled away at, so if/when you wanted to apply again, you might find it's effectively disappeared for new applicants.

It’s hard to get excited about going outside to exercise when it’s dark and cold and wet with sleet. I’ve cancelled a 200km ride tomorrow in favour of hibernating.
My solution today has been to take down the decorations and chop up cardboard for recycling. I’ve cleaned out my recycling and rubbish bins and cleaned the kitchen with Radio 2 blaring out cheerfully. I’ve moved my house plants back into the living room and fed and tidied them. I’ve nearly earned a cup of tea and some stollen cake but I’m a bit bored of housework now. I’ve almost finished the Cornish fish jumper for my great niece but I have seven more fish eyes to do. It’s all still better than being an overworked abused NHS worker so I’m rejoicing in being able to stay home in the warm.
@thereisonlyoneofme how can I help motivate you? We could research a fantasy holiday. Safari in Botswana? Snorkelling with turtles in Tobago Cays? Where would you like to go?
Sending positive waves to all
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My MIL is driving me crazy! She I a lovely, dear sweet woman who obviously has lost her son ,my DH, and her husband of 60 years in the past 6 months and is dealing with my dignosis too, from 400 miles away, but she just will not stop phoning.
She speaks to my lovely patient DDs every day bless them, they phone her if they know they will be out when she phones and are carrying a lot of the mental load from her.
She knows I began chemo on Wed and said she would wait for me to contact her. So far she has phoned me once on Wed, three times yesterday and once today (there will be more). I have been speaking to her every day but I did tell her I couldn’t keep that up, at least during this first intense course of chemo, and needed to be the one in charge of phoning.
I know I should just phone her and get it over with, but I just can’t face the questions and I can’t just phone and say don’t phone.
Please believe me, this is not a mil bashing post, I love her dearly, but since We’d I am just not in the headspace to speak to anyone about what is happening, let alone her.
Just another unexpected side effect of cancer land, I suppose…

I really feel for you @Podgedodge, my MIL doesn’t know I am ill but she has dementia and is living in a residential home. I fear if she knew then every time she remembered she would call. She had high grade dcis years ago and had a lumpectomy and tamoxifen for a few years. My SIL had breast cancer 8 years ago and she was infuriated by her mother telling her that it was just like her experience. SIL had chemo, diep, radiotherapy and hormone tablets.

I have my radiotherapy planning CT on Monday and radiotherapy starts on 31st Jan for 4 weeks. I need them to set out at the planning how they are going to avoid my tissue damage before I will feel comfortable.

Thanks @MrsPnut. Bit the bullet and phoned and had 15 mins of what did they say, you sound well, that’s not so bad, nearly over(?) , etc etc. However, I know it will have made her feel better so that’s good.
I hope the planning meeting helps. Sorry if I’ve missed it, have you had other radiotherapy which caused damage? The cure is just so aggressive, isn’t it. It’s especially hard to get your head round if you had no prior symptoms before screening I think, it feels like your making yourself I’ll deliberately somehow. 🤷‍♀️

I had an extravasation of epirubicin and fluorouracil into my chest from my port in July. It caused a lot of tissue damage but thankfully I avoided a skin graft.
I still have a lot of damaged tissue that goes across my chest, they will need to avoid the radiotherapy beam touching it at all.

I did have 25 fractions of radiotherapy before though for my vaginal cancer in dec/Jan last year.

Thanks @MissSmiley

@MrsPnut, no wonder you’re worried.
Hoping for the best for you.
In chemo news, am on day 4 of round one and physically feeling ok. No massive appetite, but eating soup, milky drinks, fruit to make sure I can take my meds. Last day of steroids and Granistron for this round but still 4 more days of Accofil injection. I think it’s the anticipation of the side effects that is the worst at the moment, I keep waiting for them to hit…

For those undergoing chemo treatment/on targeted therapies, has anyone been notified of their eligibility for a Covid booster and/or received a PCR test in the post? I checked the list of eligible immunesuppressed and while palbociclib isn't on the list of drugs, I do have metastatic cancer (which IS on the list) and havent received a letter or anything at all.

I only know about this based on the main Covid thread on here and another location.

I don’t know if this will help answer your question @HerbalRefreshment, but I had to have my booster before treatment. The oncologist gave me a letter in case there was a problem but I was actually just about due anyway.

@HerbalRefreshment did you have a letter about getting a third primary dose? My third jab was recorded as a booster even though I insisted otherwise. I rang the Covid centre whose number was at the bottom of the letter I'd received and they said to take this when I go for my booster as proof of eligibility. I had a PCR in the post just before Christmas to have in reserve. I'm on Niraparib which is a targeted drug. I would imagine your GP would have to notify someone as to your eligibility - my GP told me he'd marked my file in some way so when the computer 'sweeps' it would pick up people like me.

Herbal Refreshment Ive heard nothing about the PCR test. Got a letter about a third jab but had already had my booster. Have not heard anythin g about the new Covid pill for CEV people either. Sadly if any of it has to come through my GP surgery it will never happen.

I had my third shot in Nov - when I asked my bc nurse I got a standard letter from the hospital to take with me to explain this was a third not a booster. I haven't booked a booster (4th) and I'm not sure that fi I will or not.

Before Xmas I got a PCR in the post and a letter explaining that if I tested positive someone should contact me within 24 hours to begin a specific treatment - but the treatment wasn't specified.

@TopOfTheCliff hope you get some fine dry weather soon.

I'm getting my port removed on Monday and if I can't drive myself I'll have to get the bus. It's a very small procedure but in my left shoulder - so same side as the gear changes. Anyone else drove themselves home after this?

@thereisonlyoneofme I got that letter after I’d had my third dose and threw it out. It seems you need to show it after three months to get the fourth dose. Pity they didn’t say that at the time! I’m going to go along next week with a hospital letter about my treatment and the NHS text message about the third dose and try my luck. I’ll keep you informed

@Podgedodge regarding your MIL I think you have to decide how much you can cope with and put a limit on calls. If you decide three times a week for example then leave the answering machine to deal with her. It’s hard enough getting through all this without having to carry others too. My DPs were so worried about me last year I think it gave them something to think about other than themselves and Covid. I’m just glad my DF could see I was recovering before he died in May. Now I have DM alone and grieving and wanting company. It’s hard not to feel guilty when I leave her on her own but I do have siblings who could do more.

Just do what you can, and keep some energy spare for yourself xx

Filthy wet and cold and windy here so I am turning out my rackety old lean to conservatory. No treasure yet just a lot of supermarket carrier bags!
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Thanks everyone - I had my third dose end of October so if there is a fourth "booster" then its coming up soon for me. I believe if you haven't received the priority PCR then you can call 119 from Monday, which I may do.

I may have also not read some letter at some point thoroughly enough and tossed it away and it had information on it. Seems all so very hit and miss after all that CEV list drama!

Hi everyone. Can I ask about breast cancer radiotherapy experiences? I'm due to start radio on Monday after planning CT on the 31st. All the way through the diagnosis and treatment planning stage I was told I would have 'targeted' radiotherapy. After referral to the radiotherapy team as my chemo was ending I was told I would be given 5 doses to the whole breast plus an additional targeted 5 doses to the tumour site. Now it seems that as no markers were put in when my tumour was removed the radiotherapy can't be targeted to the tumour site and I'm only getting 5 doses to the whole breast and no targeted treatment at all.

This has me really worried - the radiotherapy gives a reduced risk of recurrence of 30% (far greater than the chemo) - but I'm concerned that I'm not going to be getting the full radiotherapy treatment the team advises just because the surgeon didn't put the markers in that he should have. I'll raise this on Monday and also planning to take it to PALS but would be interested to know what others have experienced.

For context my mum received targeted radio a few months ago based solely on where her scar was - my tumour was just behind my nipple so very easy to identify the site in my ginormous boob.

@SewingBees I didn’t want to read and run. I had the FAST five intense treatments after chemo and surgery. They never offered any targeted treatment but the five nuked my whole breast very effectively. I think asking for more explanation might reassure you
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Sewing I will probably find out on Tuesday exactly what radio I am having but was provisionally told 15 sessions Mon to Fri. But mine is stage 3, in skin and MRI thought maybe in chest, very large lump, awaiting lymph node results and exact results. I did read somewhere medical there is now increasing evidence that 5 sessions is enough. I also have not had chemo and currently not in plan though that may well change. Think it was this - mine is not early stage.

www.breastcancer.org/research-news/accelerated-rads-has-same-effect-as-traditional

I would definitely ask your team and I am not medical but I would not be overly concerned about that. Also would imagine they monitor it and adjust if needed though not at that stage yet but mine seems to revise plans each time. I do think its best though if you have confidence and fully understand the reasoning for the treatment plan otherwise you worry more.

Thanks everyone for the replies about radiotherapy. Had my first session today and was reassured that I'm getting the treatment I need. I do have a number to call if I want to follow up but not sure I'll bother.

My boob is quite tingly and uncomfortable now - I wasn't expecting that.

I had my radiotherapy planning appointment on Monday, I forgot how cold it is in the scanning room.

Of course when I was on the slab with my arms above my head trying to hold my breath for 20 seconds, my ear became intensely itchy. I also had problems with my consent form which needs to be redone as my oncologist had put that my intramammary chain of lymph nodes be included but that is where my damaged tissue is so I have asked that it is not included.

I shall see when I go for my first appointment in a few weeks. I was also amazed at how busy the unit was, at the private unit I went to before it was so quiet and there may be 3 people in the waiting room maximum. The chemo suite had separate rooms too so you never really saw anyone other than the nurses.

The unit at the hospital was like Piccadilly Circus, I'm sure people had just come for a day out.

Like the Piccadilly Circus ref-ours is too (St James, Leeds, so it’s mahoosive). I may continue to go back after my treatment’s complete because they are VERY generous with a cup of tea and a packet of biscuits!

@MrsPnut Ours is pretty busy like that - there were 7 rads rooms, always busy. Should be obvious, surely, that they need to consider the damaged tissue. Interesting you're having 4 weeks - I though 3 was standard unless you can do the one week intensive (which I couldn't either).

Apparently have spectacularly good breathold technique. I'm going to add it to my CV

Ports out!

Congratulations @Acinonyx2 on the breath holding and the port removal.

I’m perplexed and a bit tearful today. Nearly four weeks post mammogram I’ve heard nothing. I rang my lovely BCN team hoping for some help but got a secretary of the “computer says no” brigade. She could see I had been for the mammogram but no letter to my GP and no result. I’m not under any surgical team for follow up and “they discharge you after surgery”. When I asked about long term follow up she seemed to be telling me there is none. Is this a new Covid thing perhaps? Surely there should be an annual check or something? I’m feeling a bit lost now, and I’m still having Zolendronic acid for two more years and exemestane for four years. I’ve emailed my GP for help but I don’t want to make extra work for them

@TopOfTheCliff I'm due to have a check with the surgeon in a year's time (Dec) but my annual mammogram will be in April as the first anniversary of my first surgery. I'm sorry you are having to wait for the results.

@Acinonyx2 I'm having 3 weeks and a week's booster to the tumour bed. I need a reduced dose anyway - certainly less than I had for my pelvic radiotherapy.

@MrsWooster I didn't see any tea and biscuits. I might have a proper look next visit. The oncology department is also in the same building and same waiting room so I think it makes the place busier.

@TopOfTheCliff I've just been looking into this myself - there just doesn't seem to be any kind of organised follow-up . Awful to leave your scan results so long - even if they are fine. I think the medical impact of our anxiety is overlooked and underestimated.

I was advised to get in touch if I had any pain that 'kept me awake at night'. That's it going forward. I should think if it got to that point it might be a bit late.

There are all manner of marvellous blood tests being developed - but not for the very near future.

I don't think it's a new thing. I read somewhere that regular scans are not recommended because 'they don't improve survival rates' but I like to think that advise is thoroughly out of date.

I am compiling a major diet overhaul for the household. It can't hurt - and I need to feel I'm doing something and not just drifting.