Husband about to begin cancer treatment

nana5852. I am sorry to hear his diagnosis as well. Lots of information already which I can only add that I have had chemotherapy and subsequent immunotherapy for Non Hodgkins Lymphoma and I found their closed Facebook forum extremely helpful together with all their on line booklets. I think you will find that all the different cancers offer the same.

Take each day at a time. I know it's so often said, but I can vouch that it does help when your worries almost wash you away. I also let both my daughters know what was happening on a joint whatsapp type site. So I could write down everything that was happening to me and all the medical stuff so I didn't have to repeat it on the phone which was very tiring. People....not my daughters of course....ringing all the time was tiring and upsetting so can you tell your friends and family you will send a joint email with all his info. Or something like that.

Very very best wishes to both of you. Each cancer and its treatment are so different. Macmillan and Maggie's centre's are well recommended. But I used neither so cannot comment.

Luckygirl, our experience mirrors yours. LPA on health and finance essential

I am sorry to hear this diagnosis. Do you have Power of Attorney for him - for both finances and health and welfare?

When my OH was in his final illness this was invaluable - it meant I could make all the financial decisions (including to sell out home to pay his nursing home fees) and make decisions about his care - indeed it was I, along with my DDs, who made the decision to not treat when we felt this was appropriate.

Mamie,
I do agree with your post,
We are going through this at the moment, My husband has just had his 3rd chemo session and has a check scan this afternoon,
We have had nothing but kindness compassion and help from the Oncology Unit and GP surgery.
I echo what Mamie has said,,,eat what you fancy,,rest when you want,,
One piece of advice the Oncologist gave us was not to eat any Take Aways and dont eat Stilton or live yogurts,
At the moment my husband has a particular fancy for Cup-a-soup,,,especially for breakfast,,And aslo a liquorish passion.

Thinking of all you ladies going through with their loved ones,

My parents and extended family. I had to tell my parents they had to treat him as normal otherwise he wouldn't see them . He didn't want to be treated differently. He cut people out of his life who did.

We made love every minute we could as one of the side effects was he would become impotent . I said get your hair cut before chemo but my idiot of a man said I am not wasting £7 when my hair is going to fall out.

He had been started on morphine within 2 weeks of his diagnosis as he admitted he had been in pain for a month before the results. Our McMillan nurse came every week.

This is so hard to write hence it's in bits but you wanted to know. We have always been very well organised. So we went to see a funeral director and he was very serious and asked who the deceased was my husband said me but not dead yet. He didn't even smile. So when we left my man said he's not having my body we will use the Co op.

Chemo was brutal . He had to have a blood test the day before incase he needed blood but he never did. A friend took use to his appointment and other friend fetched us. Until he had chemo didn't realise they where different sorts for each cancer and each grade. The one my husband had had to be covered with a black plastic bag as it was light sensitive. He had a heated wheat bag on his arm to relieve the pain from the chemo going into his blood . He said it pooled in his arm so every now and then he lifted his arm and felt it trickle down to the rest of his body.

Of all the side effects my husband only had 2 and it was the 2 he didn't want he lost his sense of taste and became impotent. He cried in my arms and said I am dying and can't make love to you . Told him it didn't matter.

Never lost a hair of his head. He was very tired after chemo. And I had to take his temperature every day as the chemo destroys your immune system. If his temperature when above a certain level had to go too the hospital because he would have an infection.

My husband said the cancer was like a black thing eating him alive. I had to stop him driving as he was going blind . But he still wanted to go to work So from the October until second week of November he did one of the men who worked for them fetched him and brought him back. Once at work I told them after a hour to bring him home. But I always had to phone and say bring him home now. He then slept for hours.

When he was terminal he wrote a letter to give the 22 men and one woman who worked for them telling them he was dieing but the company would continue. I was at the factory when the letters where given out there is nothing more heart breaking than hearing every one there crying . Men I call a man's man like all the men in my family where. Being heartbroken. I had to tell them all they had to treat him as normal. He had a letter sent to all their clients telling them . We had wonderful messages back all with offers of help .

Because of the tumours in his brain he had what were called satellites on his head large lumps that bled. By Christmas we knew he hadn't got much longer but he wanted to reach his 47th birthday beginning of February we promised to get him there . Christmas day was the last proper meal he eat. I couldn't keep him warm not matter how high the heating was or how I wrapped him up he was cold. My fit healthy husband disappeared before my eyes he hated what the cancer was doing to him .

He said at Christmas don't burn in me in my Jeff Banks suit as it cost £350 in mid 90's. He just said do what you want at the funeral.

He used to wake in the night screaming in pain and put a pillow over his face so the children didn't hear until the liquid morphine I had to give him in the night sent him to slept .When he got weaker he made me do it .

Those people who treated him differently he cut them out of his life. He only saw a few people . My husband always had a weird sense of humour he won the raffle at our GP surgery a cuddly snowman and the cancer ward large hamper . He said I am dieing and suddenly I get lucky.

Week before his birthday he collapsed and went into hospital but there was no room on the cancer ward so put on medical ward. What pissed me off was in A&E and the doctor pulled aside and said does he know his dieing I told her he xxxxxxx knew he was dieing why would she ask such a stupid question. She was quickly replaced by an older doctor who apologised.

One day on the ward they forgot to give him his morphine even though he asked. Again I hit the roof . His 47th birthday was in hospital only reason he was there they said they could control his pain but I told them no he was coming home. He had been given 5 weeks to live. He came home on the Wednesday after as the oxygen had to arrive and I was shown how to change the cylinders . So he came home but we knew he had days . On the Friday at 5am needed a wee so I got him on the commode but he couldn't go. I phoned the district nurse and they said they would come to put in a catheter. I phoned our daughter to come home . My husband had insisted both children carried on with their education he was dieing nothing could stop that but they had their whole lives ahead. He had his talk with our son by himself what was said was between them . Sane with our daughter talked to her on the train for our a hour. He didn't have a catheter. The district nurse set up the morphine infuser which gave him a dose every hour but had showed me the over ride button to give him extra if he wanted it.

From the terminal notice we talked about ending his life if the pain got to much. Our McMillan told me he was on the highest dose of morphine and higher it would kill him so I knew what to give him if he asked.

By the time our daughter arrived he was unconscious his mom had been saying goodbye and wanted to stay but I wouldn't let her. She told him she loved him the first time in his life. My parents brought our daughter from the station and said goodbye and left. He was on full oxygen and couldn't breath I was lying on the bed by him and looked at the children I told him to stop we would be ok he died within minutes at 1.27pm 4 days after his 47th birthday. I was 45 our daughter 20 and son 16.

The moment he died half of me died to and haven't been whole since. It was 20 years in February he died we had 29 years together and married 22. When had been together since I was 16 he was 18. My man was very wise and made me keep promises as he knew what I needed to live without him and I have kept everyone to this day .

When in October 2003 we had everything changed into my name for all the bills apart from the house it was in joined names.

The day he was dieing they phoned to asked why he hadn't been for his radiotherapy. I shouted he's to busy dieing . I phoned the following week to apologise they where lovely.

Watching someone die is horrific as my husband became skeletal there is no beauty in death. I have watched 3 people die and it was the same every time.

Nana I am not saying this is what his going to your husband but you did ask for the truth this is what happened to my husband.

When your husband has radiotherapy he can only use Simple products soap ,shower fresh etc as anything else will cause a reaction with the radiotherapy my mom had it . Where the radiotherapy is aimed at use Aqueous cream it's 500g tubs just over £3 from Boots. Make sure he uses it before and after the radiotherapy. Mom had 15 doses and thanks to using the cream she only had a very mild pink rash.

This is what happened to my husband I am not saying your husband will go through the same thing. But it will change your lives what you are facing and please follow your husband's wishes but don't treat him any differently to normal and you will find people disappear from your life's . He will get very frustrated but if he shouts at you shout back he is still the man you love and he you . You both have already travelled harrowing journey unfortunately it's only going to get worse and the treatment might not work or your husband may at some stage say no more. Then you have to make the best of the time you have left .

You sound a very level headed pair and no doubt got all your affairs in order . I wish you the best of luck and I am sorry you are traveling this road.

Some people will criticise my telling my story but you did ask . But treatments for cancer have come on from 2003/2004. But you would have been given a time frame of how long your your husband has to live . Make the best of everyday. 💐

When I was calm went back and we just held eachother. The consultant had booked an appointment for the oncologist for 3 that afternoon. We didn't want to go home so went into the countryside and cried.

We saw the oncologist and was told he had 4 months to 2 years to live . Only treatment was palliative chemo once every 3 weeks followed by radiotherapy. Had an appointment with the consultant radiologist for the next week before he started his chemo. We had an A4 sheet of all the side effects of the chemo .

We saw the consultant radiologist and my husband had a mask made to go over his face for when they zapped the tumours in his brain .

Sorry miss the bit out about telling the children. Our daughter was in her final year at uni our son had started college September to do A levels . We phoned our daughter on speaker phone with our son and said we would all be coming up the next day to see her but she insisted we told her on the phone . I asked if her house mates where home they were. So we told them our hearts breaking . But we knew we only had months. She came home the next day and stayed a few days. And went with us to tell my parents and his mom . His mom just said oh. My in laws where vile people and never gave my husband the love and attention he need but he got that from m

Nana5852 sorry about your husband's cancers. You have asked for a warts and all what to expect. I will tell you about my husband it's not pretty but it will be honest if you don't want the truth then don't read it. Only wish someone had told us what to expect.

First thing I would say is contact McMillan and make sure you have all the benefits you can get plus all equipment you will need. They are a great support and we couldn't have done without the McMillan skin nurse at the hospital and when my husband was terminal out dedicated McMillan nurse without her we wouldn't have gotten DLA and carers allowance.

Well here goes. 2000 my husband even though he owned a business could stay in the office everyday. In late October he had been on site and said I have caught my face on site. My husband had thick black hair and thick busy heard and moustache.

It was just above his right ear in line with his eyebrow in his hair line. I got the medical book and found a picture of what I found a malignant melanoma. Next day got him an appointment at our GPs . Said it was a bleeding mole. So I asked the receptionist which of the GPs specialist in skin problems. He saw that GP next week we had an appointment to see the consultant dermatologist. He said it looked like a malignant melanoma but because it was so close to his eye he hadn't got the skill to operate so would put in an emergency appointment for plastics department. He sends for the McMillan skin nurse to come and see us. She arrived within 20 mins and talked to us about cancer and what they would do.

We saw the consultant plastic surgeon November he said it was benign I said it wasn't. 27th December 2000 my husband went for his biopsy. We lived in the black country and always had heavy snow so my husband walked to the hospital 3 miles away. Luckily on the way back buses where running.

Second week of January 2001 saw the consultant plastic surgeon he apologised to me my husband had grade 4 malignant melanoma and given 5 years to live.

We had to tell our children aged 17 and 13 their dad had cancer and wouldn't live to see them grow up. My husband cried himself to sleep in my arms for a week . Then I could cry.

My husband decided he didn't want anyone to know apart from us he would die as in his words he didn't want to treated as dead man walking. And couldn't have stood people treating him differently.

End of January 2001 he had the cancer removed it was 2.5mm so they had to cut as deep and all around the the cancer same distance. He had shaved his beard to a goatee. They removed a large oval patch from his face and took skin from the left side of his neck for the skin graft. He had a scar on his neck which was 8" long.

They where worried because they had to operate close to his eye his eye would drop and would need 2nd op to pull it up into place but luckily my husband had very good muscles and his eye didn't move. Because he wore glasses he took the arm of the right side so he could use them . A medical student on the ward asked him why he had done that he said it was common sense as he knew he would have a large dressing and needed to wear his glasses . My husband was a draughtsman by trade so was very practical and intelligent.

So as far as everyone knew he would be ok as they got all the cancer and didn't need chemo or radiotherapy after op.

When you have a skin graft the edges of the graft the skin dies and the nurses had to do what was called picking where they had to pull off the dead skin. Which was painful but my husband stayed still with tears rolling down his face while I held his hands. I remember wanting to cry and screaming in my head but I had to be brave . He couldn't talk while they did it . We went every week until the graft took and no more dead skin.

We where told by the McMillan skin nurse what to check for and every week I had to feel all over his body for any lumps . My husband was a devil and when I was feeling his legs he kept saying higher higher .

The consultant who did his operation who said it was benign left the hospital not long after my husband op. But we had a wonderful consultant and we had him from them on.

My husband had 30 stitches in the graft and having them removed was painful . To help the nurse as the scalpel became blunt after a few stitches. I helped her by getting ready sterile ones ready when she needed them . She offered to stop half way through but my husband said no carry on . Took over hour to get them out by then my husband had tears rolling down his face . But he never moved .

Since his op we had been going every week to the hospital after the stitches where removed . I changed the dressings at home and only went to the hospital every 2 weeks . My husband had fast healing skin and soon it was once a month then once every 6 months for blood tests .

We lived with the sword of Damocles hanging over us waiting for the day it would drop . It was hard on us keeping his secret but we did. Summer 2003 our son was 16 and had his last holiday with us. We had told the children once they where 16 they didn't have to come on holiday with us if they didn't want to . That summer my husband had a cough so his consultant had a special blood test done and found cancer cells . Took a while for the results to come back . Cancer had returned so my husband had CT scan with dye.

The consultant phoned me at home asking us to go in the next day I said is it bad news he said sorry it is. So 8th October 2003 our world collapsed around us. The consultant had us there at lunchtime and cleared out the department it was just him and a nurse. He showed us the scans 6 tumours. 3 in his right lung ,1 in his chest and 2 by the optical nerve . I remember screaming and hobbling out of the room followed by the nurse who held me while I cried.

Nana5852 I am really sorry you and you husband are facing illness and a difficult treatment regime. I won't offer advice as it's a while since I retired from nursing but I wish you both well and hope to hear things are getting better for you.

My very best wishes to you both

Having been on the other side from you when I had breast cancer there were times when I thought the worst and it was difficult to get out of this mindset . I found the radiotherapy made me progressivly tired but one thing kept us going . I got an early morning appointment each day so we always did something else afterwards if it was only a short walk in the park . That made a difference as I did not have hours to fill before I went in for the treatment . I found it upsetting that the radiographers would do a lot of whispering between themselves and then just left so I asked them to please let me know what they were doing and tell me when they were leaving .
Some people just do not know what to say to you . One friend phoned to say she had just heard the terrible news about my diagnosis , that cheered me up no end.
Just go with the flow as far as your DH is concerned and let him see you are on top of everything and let your guard down when you are on your own .
I wish you both well .

Sending all positive thoughts to you and your husband nana5852 at this very difficult time. Very supportive words from Mamie, which echos what my sister experienced when her husband underwent chemo and radiotherapy for his cancer treatment. 💐

Just wanted to wish you both the very best

I have no experience to offer you nana, but send my best wishes for whatever the future might hold for you

Just popped in to wish you all the best My precious Dad died from stomach cancer he only lived a horrible three weeks after diagnosis so no experience of chemo or radio but I can only echo others and say Macmillan were brilliant got me all sorts of help and were there when I needed any information or help

My husband lives with Stage 4 prostate cancer. He was diagnosed just before the first COVID lockdown, which meant treatment became difficult ie chemo and radiotherapy, because of his reduced immune system during a pandemic. He didn’t have the full course of chemo. This is his 5th year of cancer, so doing well. He is on strong meds, which make him tired, so we just live one day at a time. A walk every day, working in the garden, watching sport on TV. We try and stay strong and positive, but occasionally have a wobble. We have a big family and see kids and grandchildren all the time, which lifts our spirits. Thinking of you, Nanna5852.

I dislike the references to fighting/battling cancer. The treatments attack the disease aggressively of necessity. The patient does their best to tolerate treatments and continue to cherish their loved ones, to live as well as possible

Nanna5852 I'm sorry to hear of your husband's diagnosis, you sound as though you have a lovely thoughtful, practical approach to supporting him through his treatment. Much good advice here and I agree, there should be a nurse specialist attached to the unit where your husband is receiving care who is your go to person to guide you through this. And I so agree with the poster upthread

We found no comfort in talk of fighting cancer and being brave

My daughter found the suggestion of 'fighting cancer' particularly galling during her recent treatment. I know it's well intentioned but what happens if you lose the fight? Does it mean you didn't try hard enough?

I hope your husband gets the best outcome possible from his treatment

Nanna5852, I’m sorry to read you’re joining many of us living with the reality of aggressive cancer. It’s true that treatments are often more successful but that isn’t the case for everyone. The Maggie centres are peaceful places where you will find support.
Knowing that your husband’s cancer is aggressive can help you make the very best of the life you have together
Sending best to you

I would echo the Maggie's Centre. Also I joined a Facebook site (not public) for Kidney Cancer and the Kidney Cancer society. We went to 2 conferences organised by them which were informative and reassuring.
He was on a drugs trial at first but unfortunately he had to come off that as his poor body couldn't cope. He had 3 further chemotherapy and immunotherapy treatments.
He lived for 4 years after his diagnosis of stage 4 cancer.
This was during lockdown at the end

I wish you all the best on this difficult journey.

He should be allocated a specialist nurse who will be your GO to person with any queries, honestly cancer care and treatment has come on in leaps and bounds in the last 15/20 years and people are living much longer and treatments although hard are not so harsh. Treatment are more targeted to the type of cancer these days, not the one size fits all it used to be. As far as resources Macmillan have fantastic library of booklets that cover all aspects of the illness and it's treatment and are easy to understand. If your treatment hospital has anything like a Maggie's Centre, take advantage of their wealth of knowledge too.

I am so sorry for what you are going through and have been through. My husband of 50 years was ill for eight years before he died. I cared for him 24/7 on my own during the last three years of his life. I made him a promise that I would never put him in a care home so our home became a type of hospital.

The one thing I wished is that he would have talked to me about his plans, what he wanted etc. etc but he refused. He would not accept that he was going to die so I never was able to sit with him and talk about our lives together, he was 18 when we met so we grew up together. Luckily I knew him inside out so knew what he would have wanted.

All you can do is take one day at a time, there will be ambulance call outs, hospital admissions but that comes with the illness. I would not wish what you are going through on my worst enemy. After all these years on my own I still cry for him, still miss and love him and I still have his ashes at home, they are waiting for me and then they will be scattered together in a place we both loved.

My thoughts are with you.

Sorry to you are going through this, my husband had both radio and chemo and has been said be led by what he wants. I drove him to his appointments and for chemo we were given a pass to the the staff car park as it was a London hospital with little parking. On chemo days we took lunch and ipads or cards to keep occupied. Family wanted to visit but it exhausted him i had to risk upsetting his brothers by saying no hes too tired. Dont be afraid to fight his corner if he runs out of steam chemo appointments were all day jobs and exhausting for bothof us. I wish you both well.

Honestly you need to speak to his team ....there are so many treatment variations .....I had breadt cancer and there are so many different types and at least 25 types of chemo for BC that I know of ...so likely many more....each one will have a different protocol ( ie how often you have it and for what duration)....each one will have different side effects .....some require steroids alongside, some don't....some chemos you lose you hair, get neuropathy, lose your nails etc...some don't....some you have to self inject to boost your white blood count every night...some don't...and thats just the chemo....ask 100 people who have had cancer treatment...you will get 100 answers....hope all goes well

I send my kindest thought too nana. My husband had a dedicated nurse and she was very good, ringing him at home and coming in to see him when he was in hospital and we hadn’t told her he was there. I can only echo what has been said by previous posters.

As others have said it’s an emotional and physical roller coaster.
DH’s first course of chemo, when he was 65 was tough, but he didn’t react too badly - good days and bad, but it put him in remission for 18 months.
Subsequent courses of chemo after the cancer returned were brutal and his whole life was changed drastically.
He was advised to be extra careful with his feet and pay party attention to mouth hygiene, so gentle walks and meals re-planned.

There’s are separate threads about Macmillan nurses and Blue Badges - both are worth reading.

Good advice from others here. Sadly, many of us have first hand experience of these things.