Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

BloodyBridget so sorry to hear your news - I hope you and your DP can enjoy your trip to Norfolk.

I actually had some proper good news today - the scans and tests I had earlier in the week were negative, so I don’t have thyroid cancer. So relieved, as I thought I was going to have to get on the shitshow cancer rollercoaster again - so just got herceptin until January for my breast cancer, then I will hopefully just have surgery to even me up!

Can’t remember who asked, but definitely get a port - best thing I did. I was told during my first blood tests that my veins were awful and wouldn’t cope being cannulated frequently for chemo, so was told I needed one. I wAs terrified, but honestly, it was the bet decision for me. No-one warns you how unpleasant/weird it feels when they insert it, but it doesn’t hurt at all, and the weird feeling only lasts a couple of seconds. No-one warned me either that it’s really painful to sit up afterwards, particularly if you’ve been laying in bed! It’s because you tense your neck when you sit up. It only lasted a couple of days, but DH found it highly amusing to see me pretty much roll out of bed onto my knees getting out of bed! It was so useful for chemo, etc - and also for when I was admitted a few times, as it’s easy access for bloods, antibiotics, etc. It’s true what others have said, having cancer makes you reevaluate what constitutes a “good thing”!!😂😂

Such good news and bad news all on one day, plus a new arrival

@Bloodybridget so sorry to read that and all the very best with the new regime doing it’s stuff

@Zorgothslugofdoom - excellent news and what a relief!

@AlbertCampion - love your username

So sorry to hear your news @Bloodybridget. A trip to Norfolk first sounds like a good idea. I agree with @TopOfTheCliff's comment, and I think I would like you even more since I saw on a recent thread that you were a bookseller (I hope I've got that right!).

Sorry to hear your news too @Fuckmyliferightnow. Any idea when surgery will be? DH is an anaesthetist and they are ploughing through surgery at the moment, as our area may go into Tier 3. I hope you can be seen in a different hospital soon.

Hello to everyone else. Hope you are resting up @Lizdeflores! I had a wobbly day yesterday as I was told I'm pre-diabetic too. Oncologist doesn't think it's the chemo, but it is listed as a side effect of it. Just feel like my body is letting me down right now...... I'm normal weight, normally active, no family history of diabetes. Bah - need to cut back on the chocolate.

@TopOfTheCliff @Starmer my surgery is now 11th November which is safe apparently, I just don't trust anything at the moment.

I'm from an old thread but still lurk.
Sorry to see so many new names here, I wish you all well with your treatment.

@Bloodybridget, sorry to hear this has been confirmed as a met. I'm sure you and DP will have lots to discuss and will decide how to make the most of life. Hope you and DP enjoy family time in Norfolk.
All the best for the forthcoming treatment.

Morning all. Big thanks again for lovely messages. I have often thought how much I would like to meet people here irl, obviously we are the crème de la crème of MN. Yes @Starmer I was a bookseller for a long time, I did love it. The last shop I worked in, over 30 years ago now, was in a little community centre close to where I live, and I still see people around here who remember me from there and say hello and how much they loved the place, which closed down eventually.
I have a question for people who are having chemo and having to shield, are you literally staying indoors (and in your own garden if you have one), and your partner too if relevant? I know some of you have DCs at school etc so how does that work? DP and I are already thinking she will go out for a walk every day, and maybe meet someone outside very carefully at times when my blood count should be better, and I might join her for walks sometimes, we could drive somewhere quiet and scenic occasionally, that sort of thing. I just can't cope with the prospect of staying home non-stop for six months. I know lots of people have done it but ten days each side of surgery recently was extremely testing, and I did have a few walks then.

Oh that's rotten news, @Bloodybridget. So sorry. Hoping that the lung surgery has put you ahead of the curve and 4 weekly chemo does its stuff while giving you time off to enjoy the good weeks.

Cross-posted.

I was shielding from the end of January to July. I did do scenic drives to empty places. Being able to see further than four walls and the view from my window helped a lot. My oncologist said I could see people in my garden, if we kept at a distance. In some ways it's easier in winter. Fewer people about. You could drive to an empty beach - Camber Sands? - and have nice soup in a flask and get out and stretch your legs. Watching the waves is always good for the soul. And it will feel like a normal day out. I live on my own, so can't help re DP, but am sure others will have good advice.

@Bloodybridget So sorry to hear your news I'm sure Norfolk will help a lot. I love Norfolk do you do a lot of walking when your there? How DH and I are not still wandering around Norfolk looking for our caravan site, after a drunken night in Great Yarmouth I'll never know!.
Before my op the anaesthetist said to me that he felt that staying in the house at all times would be extremely detrimental to my m.h. He felt that as long as I was sensible, practised social distancing, didn't touch anything and washed my hands after being out then going out for walks would be ok. Obviously you know your own own circumstances better than me, but mental well being matters more than ever at the moment.

@Starmer I'am resting ,luckily the weather is awful here so I have no desire to go anywhere.!

Hello All.
Newbie here.
I noticed an unusual brown patch on my toe last week, got it checked yesterday and the doctor had a chat with a collegue and theyve decided it requires an urgent referal. Feel very sick at the moment.
Can anyone offer some advise on how to get through the next few weeks wait. Im a worrier anyway. x

Morning folks
@Bloodybridget re the shielding we have been isolating since July with only outdoor visitors and no close contact with anybody. I relaxed and sent DH off on a long bike ride to Wales where he stayed overnight with friends. It backfired because when he got there at 10pm they announce their daughter was unwell. We had a nervous week but all was well. This week same friends told us they all now have Covid and wife is in hospital! I’m not as relaxed any more and poor DH can only do day trips.
It’s a challenge coping with chemo and Covid to be sure!

@Mummytwosons This bit is the most anxiety provoking and your mind will run riot. Try to stay off google and just use NHS sites or Macmillan. You should be seen within 2 weeks in the skin clinic and then you will know what’s what. It helps to stay in the moment and keep busy with jobs to distract you. And meditate if that helps.
Keep us posted
TopO

Thank you @Bloodybridget
Yes im not very good at waiting as it is. Was told 2-4 weeks because of covid.
Going to focus my mind on xmas and make an early start.

Oh bollocks @Bloodybridget - I'm so sad to read your news. Norfolk will be a tonic and hopefully give you a boost for what's to come.

In terms of shielding - I was shielding from March to August, basically until I had finish chemo and whilst I was waiting for transplant. That was more to do with how aggressive my chemo was. I didn't leave the house/garden apart from hospital appointments. Only the month in between was unable to go out for walks with friends.

Now I'm post transplant I'm now shielding again until I get my childhood vaccinations (so not really Covid related) - which will be sometime from 3 months onwards. I can go for walks but I'm still supposed to completely avoid people. I can't really plan on seeing people before March 2021. I don't have DC but if I did, I would treat them as part of my support bubble - making sure as I do with my current bubble we take necessary precautions.

I'm sat in the hospital waiting to have my Hickman line removed. Just waiting on blood results - I'm not hopeful it will be done today based on the low platelet count I had on Monday .

Even though I have all the symptoms of a stinking cold - all my tests came back negative. So I have no idea why I feel so awful. Still being sick on occasion too.

Sorry Topofcliff.
Cant you tell im new 🤣

I was SnowsInWater previously

@Bloodybridget So sorry to hear your news, it's all our worst fear. Another round of Chemo is shit but I know you will get through it with good humor and grace as always.

I am technically well just a year now after my treatment for Inflammatory BC but still get very tired and worry constantly about recurrence or Mets. It really is a new normal!

I have often thought how much I would like to meet people here irl, obviously we are the crème de la crème of MN. Me too! I have actually met two MNers irl who live at opposite ends of the country. We had a particular topic in common and it was wonderful (though DH and the DC were a bit aghast at me meeting a potential mad axe killer total stranger.

Shielding - I shielded from March to July, not because of chemo but because of my other underlying health conditions. Having chem last year was like a corona practice - being careful about handwashing etc. DH is 70 so vulnerable but not shielding though he is more anxious about it all than me.
I felt I was lucky because a) we live in a small village, b) I have a lovely garden and c) it was spring / summer. During that period I had all shopping delivered, I didn't go out anywhere in public apart from medical appointments.
What we did do was walk. Every single day around the fields and country lanes. Later as lockdown eased we got in the car and drove to nice empty places for a walk and a picnic.
The only visitors we had were outdoors in the garden. Even our DC didn't come close. Still don't sadly as both work in high risk jobs.

Hello to @FlatandFabulous.

I found you all it took me a while I'm not that bright I think chemo killed a few of the working brain cells
Bloody Bridget sorry to hear your news In regards to your chemo question I had to shield from April till the end of August. I was advised to walk every day but to maintain social distance. my husband was advised to not work and his company where really great to just leave him off on full pay for the whole time!! I still can't quite believe it round about the end of June the oncologist gave me the go ahead to send the kids back to school and hubby back to work.
I started rads last week I'm exhausted and hubby is home again for the next 3 and half weeks I have 18 sessions left and hes not risking my treatment being held up by going to work and also I need him to drive me to Birmingham every day. But the kids are still at school they arent concerned with them being at school.

Thanks all for telling me about what you did/are doing while shielding. I reckon walks and drives will be an acceptable risk for me, although I will discuss it when I have the pre-chemo appointment. DP will certainly be very careful, but I don't want her to be more bored and isolated than absolutely necessary. Unfortunately we live in a densely-populated area of inner London where there is a lot of poverty and poor health, and many people being pretty careless about social distancing, masks, etc.; also infection levels are high, so I can't be too cavalier. We do have plenty of green spaces within easy reach by car, as well as walkable.
@Lizdeflores we'll definitely have walks in Norfolk, possibly not long by other people's standards, but we can stagger a couple of miles! Mainly I want to see my family there, and just enjoy fresh air and big skies.
@InOtterNews sorry you are feeling so rough, I do hope the vomiting stops soon, you poor thing. Did the line come out?
@FlatandFabulous nice to see you - hopefully as time passes your anxiety will lessen if you carry on getting the all-clear.
Good wishes to everyone, you brilliant lot.

The line did not come out. Instead I had a unit of red cells and a unit of platelets. They will see where I am in a couple of weeks. Platelets need to be 20 - they're currently 12.

I do not have a cold. I have a fungal infection in my mouth. The vomiting is scarring from the mucositis - it's hard to digest some foods. So I just need to watch what I'm eating (last night was toad in the hole)

The doctor told me I need to be more patient and not to expect feeling ok until Christmas.

I've just arrived home (I've been at hospital at 8.30am) to a card from my bloody bastard friends and colleagues. They have clubbed together and transferred a generous sum of money into my account. Wankers. I wish they'd stop being so lovely

Sorry everyone here is going through so much shit at the minute.

My update is really no update yet just wee wobble. Over 3 weeks post op and beginning to think non news was good news I just got a call from surgeons secretary to ask me to come in tomorrow am and bring nok. Doesn't sound like outcome I hoped for.

Just found out today about a benefit I had no idea I was entitled to (Macmillan mentioned it when I called in to see them about something else) - so I thought I'd share on here in case it's of use to anyone else. It's called employment support allowance, it's not income based/capped but instead it's based on your national insurance contributions (I think). You can claim as soon as statutory sick pay ends at 28 weeks, and can be backdated for 3 months (longer possibly - they make a decision on a case by case basis). I was very lucky to receive full pay from my employer for 6 months, but it dropped to 1/2pay once ssp ended. It was easy to apply for (you need your national insurance number and the date sap ended) and you can do it online at www.gov.uk. I had no idea it was available! I applied last week and they phoned today to let me know I should get a payment in the next week. Hope this helps someone else!

@InOtterNews those bastard friends! How could they be so kind it’s ridiculous!

@gillmoregirl Don’t panic! It might not be as bad as you are thinking

@Zorgothslugofdoom that’s useful to know. I am having a very weird time with money. I am on full sick pay but also claimed my pension and am now getting both paid in monthly. Then the business suddenly paid out some money owing from 2019. I’m awash with the stuff and can’t get out to spend it. I’ve never been as rich in my life. But I’d rather be healthy. It’s like the universe is balancing things up and sending me a bonus to make up for the cancer

I found you all! Apologies for radio silence, caused by chemo fog.

An intro for the new-ish thread: aged 39, diagnosed with breast cancer in August. ER and PR+ HER2-, 12mm tumour, but 5 cancerous lymph nodes. I also had a drip feed kind of diagnosis with more horrible news at every appointment.

Currently 3 days past my third chemo. I'm doing dose dense EC 4x, then Paclitaxel. The first two rounds were a bit crazy on a steroid high that lasted several days and nights, so this round I'm on much lower steroids and just so so so tired. Not sure if I preferred being high to being tired?!

There were some hair questions/ comments further up the thread. I'm cold capping. Started shedding very badly on day 19. Now on day... 32? I think. Have thin rubbish hair on top, but with headbands it still looks okay from the front. Although the headbands are getting wider and I've bought two emergency turbans in case I give up. Or my hair gives up. Whoever gives up first.

Sending love to all xxx

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