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.

@Tryhardermum I really wouldn't bother dwelling on the predict score, it doesn't take into account radiotherapy and it doesn't take in to account any other factors in your life.
It's really difficult when you feel the goal posts slipping away from you and what you thought would happen now isn't the plan.
I do almost think we need to be like @TopOfTheCliff bobbing round the UK in her boat, she knows what she is doing but she isn't in complete control. However, her greatest strength is knowing when it's time to take cover and rest for a day or two.

If you aren't happy with your care then a complaint to PALS or patient experience often works a few miracles but once you've had your ANC and they have tested those nodes then they'll be able to give you more information and remember that you know you best so if you aren't sure or want more information then you are entitled to that no matter what any of the professionals think.

I need to rant! I have bloods taken 3/4 days before I am allocated my next lot of medication ,Niraparib. My oncology hospital is in a different Trust to my area
and is a 30 mile round trip away. The last two times Ive had bloods taken at local health centre, 2 mile trip, who send them up to my area Trust, who then are supposed to forward them to the Oncology Trust. However on both occasions they have not arrived despite me being assured they will be sent. Had my med review today, so I could collect my pills and I cant get them because they have no blood results! IOf course its the weekend isnt it, so cant get any answers.I always sweating on my CA125 results and nothing.

Sorry, bit convoluted but Im so cross. This Trust made a complete hash of my diagnosis and treatment when I was diagnosed, so when I was transferred for treatment to the other Hospital I was thrilled, as they are brilliant. Going to worry all weekend now.

@thereisonlyoneofme that is thoroughly unsatisfactory and I can relate to the worry and stress of not getting your tablets due to incompetency, you poor thing. Having to wait over a weekend is so much worse too. I'm the same, sweating over my CA125 every month, I've had several occasions where the 'main' results are through, so at least I'm 'allowed' my tablets, but the CA125 isn't back yet. One time, this went on for several days, I was in such a frenzy I booked myself in for another test that day (luckily someone had cancelled) at the main hospital, rather than the health centre which is so much more convenient and my usual place, and used one of my hoarded up blood forms. That one came through the next day.

Try I had the oncotype test done, was lucky hospital agreed to fund it as my benefit on Predict was 6%, its normally funded automatically at 3% to 5% 10 year benefit at my hospital and you may fall into that though my results came back almost identical to Predict and it added a few weeks to get them. So I did chemo, its hard to know when you are borderline and does give more data.

I am 75% 10 year survival now on Predict rising to 82% if I successfully do hormone therapy. Also remember the data will be 15 old and survival rates have doubled in last 40 years and continue to so you can probably almost halve the death rates now. And then there are things you can do that help like survival rates are twice as good for those who exercise 3 to 5 hours a week and are better for those not obese or underweight so there are things can do to reduce risk. I think when you first find out you do assume you will die but as time goes on you start to worry more about never ending treatment rather than death.

But its still very possible to enjoy life inbetween the trash that is cancer. Sometimes have to adjust things and gosh wish could go back to pre cancer, pre covid life but there are still good times. Today I went to Minack theatre and really beautiful. I wonder if the boat in the distance was Top, was about 9.30pm.

Love to everyone.

Silkie, lots of love to you too. Xx

That was beautiful @Silkierabbit thank you

Do any of you have any knowledge on being homeless and having cancer?
I was diagnosed with endometrial cancer last week. I am still waiting for scans to determine the stage but it is believed to be grade 2.

By the end of July the courts will have evicted me from my rental home. I have been battling for months to try to negotiate. I have been looking for a new rental for 16 weeks and been offered one viewing. I'm on the council lists but I'm in the lowest priory banding and only eligible for a 1 bed. I am challenging this as I feel I need a second bedroom to accommodate family staying to care for me whilst I undergo treatment.

I just don't know what else to do. Nobody seems to be able to help. Feeling very broken right now.

Thanks Mowly and Jelly

So sorry to hear that Dobby You should be high priority with cancer, Macmillan can help and Shelter have a guide, cancer comes under equalities act to automatically class you as vulnerable. Hope you can get it sorted.

england.shelter.org.uk/housing_advice/homelessness/priority_need/health_condition_or_disability

Fantasea Im going to do the long trip in the future, at least they always have the results, the Oncology unit have their own Blood testing facility. Its just so inconvenient as have to set aside half a day, then have to go over again to collect pills when they are ready! Mind you it makes me worry a bit if I cant get over there as they refuse to send prescription to local pharmacy.

Hi everyone. I do read your posts but am not very good at posting myself, unless I have a question. I hope that's OK.

I had my bowel stent fitted on Thursday. I was more worried about having to stay in hospital, thinking the procedure would be similar to the colonoscopy. I was wrong, it was really painful. And my bowel is taking a while to settle, but hopefully it will.

Another biopsy was taken on Thursday as the oncologist wanted more info. I was told she will have the results by Wednesday's meeting, so I should actually get to see her soon. Then chemo can begin.

I am scared of chemo & the effects it will have on me. I want to have it to keep me alive, but I don't want to be more poorly. I guess it's a fear of the unknown too. And I know it will affect everyone differently. I want to get started, but I'm dreading it.

I want to ask those of who have had chemo what you did about the sun. This year we took away the dog run & the trampoline & gave the garden a makeover. DH has bought me a lovely chair & a huge parasol, & I have good suncream. I don't want to sunbathe, just be outdoors & enjoy all the beautiful new plants.

I have read you shouldn't go out in the sun at all while having chemo, & also read that you can but must stay in the shade.

Can I ask your views & experiences please?

@HelpIcantfindaname I had chemo for my second cancer last summer from May to November. I was having FEC on a Tuesday every three weeks and out the next day doing things with my younger daughter.
Yes you need sun cream and yes you need to be flexible about what you do but I had very few side effects on chemo, what I did have were minimised by reducing the dose and I just got on with my life.
I’m not saying that because I did it everyone can, but listen to your body. Push yourself slightly if that’s what works for you and enjoy the sunshine as much as you can. Make sure someone is in hand to bring you cold drinks!

@Silkierabbit that’s amazing I sailed past the Minack at 9.30pm and saw all the lights. I was in a state of utter bliss as I had just sailed 50 miles from Padstow and for an hour had dolphins playing round me jumping out of the water and doing circuits around the boat. Also Lands End was magnificent and I passed it!!
im so sorry we missed each other.. I’m in Falmouth now leaving for Plymouth in the morning. @MrsPnut i think the knack is to know when to sit and rest up and when to push really hard for what you want.
Love to all
I
Top

Thats amazing Top, this one shows your boat a bit better. Sorry we did not get to meet, shame tides were so close. Dolphins around the boat would be magical.

Went to Sennen for surfing lesson today, needed some help as still weak from chemo but did the 1.5 hour lesson. Kayaking tomorrow to St Michaels Mount. Then classic car hire next day and boat next before journey back.

Help I think you can use garden fine, just put factor 30 or so on or cover up, stay in shade, similar to if really sun sensitive. Its terrifying before you start but once you start keep a diary as cycles tend to be similar and any issues ring chemo line for help. Its rubbish but it does end, mine just ended and its amazing when it ends and before then just count the days off and each day is a day closer to being cancer free. Drink loads as well and eat little and often helps.

That picture with the boat in was taken at 9.23pm. The other one was a few minutes later as the show ended.

Mrspnut and silkierabbit, thank you for your responses-they give me some hope. I’m afraid everything is made so much worse by the lack of support and unwillingness to help of the bc team. Once you’ve seen the bc surgeon for results, you can’t see him again-all qs have to go through the bc nurses, who rarely return my calls. I don’t trust them to give me the correct info, which means I need to speak to the surgeon, but he never returns my calls. Pals are useless-I’m still waiting for replies from them about three queries asked for a month ago. If I call the bc unit, they tell me to contact the bc nurses! I’ve complained to the director of nursing and the chief exec of the hospital, with no responses. Obvs, all of this adds to my anxiety and has made me v depressed, which I’ve explained to them-they just looked at me in the meeting and there was this awful, long silence. It was very awkward, so I just got up and left.

Oh, and in the post-op meeting with the surgeon, We discussed waiting for him to do the axilla clearance. I had a call from admissions the next day and when I asked for a date with my original surgeon, they said he was retiring next week. So, he couldn’t even be decent enough to tell me that the day before. What a terrible way to treat a patient. Where’s the honesty, compassion and respect?

My experience was like that too Try and its really horrible. What I did learn as it goes on is its all very territoral as well as lack of resources. So chemo will only be answered by the oncologist but chemo is better for communication once you get through as there is a 24/ 7 helpline and things there do get answered quickly. Even when I found the one helpful surgeon who would say something about chemo, some of it was right like they use Predict Breast 10 year benefit to say if doing, some was wrong, she said a longer treatment. We can try to help with questions.

Hi all, wanted to thank you for letting me hang out here. The lump turned out to be benign and the thickening in the breast was fibroidy stuff. I got everything back ok. I’m just waiting now for the hysterectomy, ovaries and Fallopian tubes out along with bowel surgery. They say I’ll be off riding my horses for three months but should be a new woman after that with the endometriosis gone. The op will take a while maybe 18months, fair enough, but I’m secretly hoping I go through menopause by then and none of this is required (i’m a few months off 50). I’d like to thank you for your support, advice and love whilst I waited for ovary, womb, cervix and breast results. Stage 4 endometriosis is debilitating but it’s a good outcome from what we were thinking it could be and I couldn’t have done such waiting without you all holding my hand.

I’ll dip out of the thread now, but I’d like to say that your kindness has meant the world to me. This scare has made me feel incredibly lucky and has also made me realise that ‘stuff’ or owning ‘stuff’ really doesn’t matter. It’s all about love. I’ve had a tricky relationship with my husband over the last few years, if something good comes from this it’s that I realise those close to you are all that matters. It’s made me rethink my relationship and not feel so angry - to not hold things in and resent him but to say kindly what I think or feel. Not sure why I’m saying this, it’s a huge lesson to me but I’m guessing you all know this and have done for a long time. You all seem very wise and grounded.

I truly am so appreciative of you all and I wish you all the best. You may not know it but you’ve inspired me throughout and I hope I become a better, more centred person because of this. Although I may be grumpy for three months when I can’t ride I shall try to remember it’s only three months and it’s not anything like it could have been.

Much love and best wishes to you all xx

So glad noone of it was cancer Original though sounds like quite a lot of operations. 3 months not riding will be hard but I would imagine after that much surgery you will need and want to rest quite a bit and maybe you could do something like walk your horses if that is a thing, you will have to start it if not. 😺

One thing about having cancer is it does show you if you married the right person as well as who are true friends and marriages seem to either get stronger or split, I guess it makes everyone evaluate things. I am lucky have a lovely supportive husband and glad things are getting better for you.

I’ll dip out of the thread now, but I’d like to say that your kindness has meant the world to me. This scare has made me feel incredibly lucky and has also made me realise that ‘stuff’ or owning ‘stuff’ really doesn’t matter. It’s all about love. I’ve had a tricky relationship with my husband over the last few years, if something good comes from this it’s that I realise those close to you are all that matters. It’s made me rethink my relationship and not feel so angry - to not hold things in and resent him but to say kindly what I think or feel. Not sure why I’m saying this, it’s a huge lesson to me but I’m guessing you all know this and have done for a long time. You all seem very wise and grounded

All the very best to you and your husband going forward. I’ve always been family orientated but this situation has been an education and hardly anything bothers me now. It’s family and peace and happiness all the way.

Here’s to all the love in the world for you and yours.

@HelpIcantfindaname Get some long sleeved sun/swim shirts if you are going out into the sun, to put either on directly or on over a swim top. They are usually 50 SPF and eliminate the need to slap on the cream everywhere and keep it topped up. I also got sun sleeves and a shrug from Solbari - its an Aussie company so it takes about a week for things to arrive, but I used their gear in Thailand and it kept me cool, comfortable, and protected in the sun. Now I use the sleeves if I want to sit in the garden in the sun for 15 or 30 minutes without smelling like a bunch of sun tan lotion. Mountain Warehouse usually has the swim shirts (also called rash guards). Also check golf shirt providers, a long sleeved golf shirt made with SPF fabric would work. Coolibar is another provider, but out of the US, with a wide range.

I havent had chemo, but I have had axillary nodes out and sunburn can prompt lymphodema, not to mention a lot of the targeted therapies its not good to be out in the direct sun.

Two and a half years and 3 vaccines later I have Covid.

I tested negative 2 days ago but felt so ill today after nearly passing out I checked again. This means my darling boy also has it and that it’s been doing the rounds in the family for a month now. I think people are lulled into a false sense of well being when a first test is negative.

I feel grim.

Sorty to hear you have covid Jelly, can you get anti virals they are supposed to help.

Went kayaking today for 2 hours, energy is coming back, still some neuropathy but hoping will go. Face is puffed up with steroids still and hair needs to grow back but getting there. Much easier than surfing yesterday. Just classic car hire tomorrow.