Stomach, Back and CLL

Living with and after blood cancer
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Hi All, I hope you are all managing, durig those trying times. I wonder, however, if anyone has information on the following. I have been on W&W, since being Dignosed in 2018. Three month ago,I had what was thought was Reflux Problems, plus, stomach, chest and back pains. I have had ECG, Chest Xray, Ultra sounds, Endoscopy, and Cat Scan, all negative. I am waiting to see the Consultant, for what comes next. I have been taking Pain Killer’s re this for three months, with GP’s support, I have lost half a stone, and cannot for the life of me, put it back on . I have been on a very limited, non fat diet, and bland food. I am having trouble getting, effective diagnosis, either from NHS, and Privately, which is where I am at now. I am pushing the Medics, to tell me if there is an association, with my stomach and back pain, and the Chronic lymphocytic leukaemia (CLL). I am nauseaus, lots, and extremely fatigued. I have urinary problems which have been thoroughly checked out, and am on Child Bed wetting Pills, having tried two others beforehand. I am still havig problems and am up 4-5 times a night. I am a Botttle Half full person, but I am getting a bit fed up, now, as this is effecting my otherwise, fairly good life, up to now. I am seeing both my Haemo man, Somach Surgeon, and Skin Cancer consultant,within a few weeks, and wonder if I should get seen sooner, by them. I I have even heard that the Private Health Hospital’s, are are being stretched, by taking on NHS re Covid. I have been told by a Private nurse, who was taking my Bloods, that some of their rooms were being, 'Block Booked, and on accasion, not being used… I wold be interested in any views and advice regarding this.

W&W,

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Hi @Vindicatrix I am also on W&W as a Chronic lymphocytic leukaemia (CLL) patient.
It seems to me that you are exploring every avenue for your symptoms and I am certainly not a medical person.
I also have reflux problems and I take a heartburn and indigestion oral solution at the weekends when I eat more richer foods.
I had incontinence problems a few years back and it turned out to be a bladder prolapse which I had an op for and I do pelvic floor exercises daily. I probably still go to the loo 3 or 4 times a night.
I have reoccurring skin cancer on my head.
My main Chronic lymphocytic leukaemia (CLL) symptom is fatigue which I have to manage daily.
Personally I would say if you are in need of a hospital bed at any time you will usually get one.
I don’t know the answer but in my experience anxiety makes me tense up and makes all my own symptoms worse.
Please do let us know how you get on.
Look after yourself and be kind to yourself.

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Hi @Vindicatrix, It sounds like you really are going through a lot right now & I hope your doing okay? It is no wonder you are feeling fed up, it sounds like that is an awful lot at the same time to be dealing with. So please if you ever want to talk things through, don’t hesitate to contact our support team on 0808 2080 888. We are only ever a call away.

It also sounds like you have been super proactive in having specialist involvement and input to help decipher the cause of your ongoing symptoms.
It may be helpful to keep a diary of your symptoms in order for these to be highlighted again at your next appointments. It’s positive that you have upcoming consultations booked within the coming weeks and i hope you do get some answers.
Unfortunately we are not able to comment on the process or booking of inpatients within the private sector as it is likely this will vary across regions considering many factors ( covid being one).
However if you do feel like your symptoms are worsening please do not hesitate to contact your GP or specialist team asap as they may want to see you sooner.

Do Take Care, Lauran

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Hi @Vindicatrix I was just wondering how you are doing and what’s happening for you now?
Look after yourself.

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Hi Erica, thank you for asking, I am still waiting for my stomach issues to be resolved. I have had to change Private Consultants, as my original one, very much let me down.

So far I have had almost every test known to man? I had an upper chest scan last Wednesday, and have been told to make a Telephone appointment regarding the result, and further treatments. Another two week wait, that is four months now.

I appreciate that we are in exceptional times and circumstances, and that the Backlogs are exteneding to the Private Health Sector, too. However, I am anxious for a result of some sort.

Since then, I have also had another two Squamous skin cancers, which are being taken out, with the resultant 'Skin Grafts, on Saturday. On top of that I have had a new large and painful neck lump suddenly appear, and my Haemo man,has advised me to see an ENT Specialist urgently. I am seeing him on Wednesday, on a 'Cancellation appointment.

So I have been very fortunate in the recent actions taken. I am obviosly worried that this new Lump may be connected to my Chronic lymphocytic leukaemia (CLL). Initially my GP thougt that it may be an infection, but after a good feel, all round my neck region, he felt perhaps it was not, and that I needed an urgent appointment.

I then Panicked, and am now convincd that it is Chronic lymphocytic leukaemia (CLL) connected, as the last ENT man who saw me, diagnosed my original Chronic lymphocytic leukaemia (CLL) in 2018.

Before I read your post today, I was intending to ask, if anyone has had similar experiences, and if so, what were the outcomes. Perhaps you may be able to assist me there? Thanks again for your interest, and I wish all Blood Cancer sufferers, well. Regards Ron.

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Hi @Vindicatrix, great to hear from you
I hope your stomach issues get resolved.
I am glad that you have had so many tests, it is good to rule things out.
I bet you are anxious with the inevitable waiting, I often think that the day I was diagnosed was the start of continually waiting for medical people and results…
I do appreciate the backlogs that there are in the NHS and also the private sector.
As you probably know I had skin cancer on my head, an op plus skin graft from my leg.
The skin cancer returned on and round the skin graft in 2019 and after exhausting all other avenues again I had a similar op, but no skin graft this time, in Oct 2021.
Anyway ever since my GP nurses have been changing my dressing daily, every other day and now twice weekly. I see the plastic consultant again in mid May. The wound has now healed well, but I am left with a hole in my head back to the skull.
Last time I saw the consultant he said that they could not skin graft over skull as blood vessels etc are needed, I might have to live with it.
My husband has a lump on his neck and many tests last year, it is benign and best left and monitored.
The last time they took a sample, soon afterwards the lump really suddenly swelled up, and it turned out to have been infected by the needle used. He got antibiotics and a letter of apology from the hospital holding their hands up and the swelling went back down again.
I wish you a speedy recovery from your op and skin graft, I know it takes time for the 2 sites to heal.
Look after yourself and keep posting.

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Wishing you all the best with your appointment Wednesday Ron - hope all is well. Please do feel free to give our support line a call if you want to talk anything through. All the best, Alice

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Thanks Erica, I will keep you posted. It seems that you and your husband, have been goingthrough the mill too. I find this site very helpful, as it is good to hear from those with similar experiences, and it also Buoys up the spirit, at times. Thanks again. Ron

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Thanks Alice I will keep you updated, and once again, thanks to you, and all on this site, for the useful input of information. It really does make a difference, on so many levels. Keep up the good work. Regards Ron

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Thanks Erica, you certainly have had your own share of problems and I do hope you are feeling ok at the moment. Sometimes, we get assailed with a multitude of symptom at the same time. It’s all part of this ‘Challenging Journey’ we are all on, but there is always someone worse off than ourselves, which jolts me back from the ‘Pity Party’ which I sometimes find myself attending !

I am still waiting for my stomach problems to be resolved and I await the results of recent tests.

In respect of my Skin Cancers, I am having a small op on Saturday to remove two squamous sites, with a skin graft from my thigh. No Driving, Exercising or Showering for 1-2 weeks, So it will be Rest, Books, and Music for a while, which I am rather looking forward to.

I am having an Ultra Sound tomorrow with a Biopsy if needed. The ENT man is hopeful, but did say that it might be neccessary to remove a couple of other nodes he found near my collar bones. I get the impression that they are loathe to remove the larger lumps on my neck. Hopefully however neither will be needed.

All this has been excasabated somewhat by the ‘Disbanding’ of the ‘Red Cross/Macmilan Cancer Driver Volunteers’, who have been absolutely marvellous over the last few month, with the long drives to Edinburgh Hospitals which I have to make.They will be severly missed by many cancer sufferers in the ‘Scottish Borders’, as well as myself.

It does look like ‘Money and Politics’ are involved as per usual. Thanks again for your help, and I wish you well with all of your own problems. Regards Ron

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Hi @Vindicatrix so you are still awaiting the results on your stomach problems, waiting is never ending since most of our medical issues started, nothing worse.
You are having your two squamous removal small op, not so small in my view, on Saturday. I had the skin graft taken from my thigh too. I cannot see where it was now.
I was told not to shower (or exercise or drive) for 12 weeks. Not to shower, well after a couple of weeks I was climbing the walls, it was a boiling hot summer. So out came a shower hat and rolls and rolls of cling film and plaster to try and make the skin graft area watertight.
Later on I managed to wash my hair.
When I returned for my 12 week check up the Consultant said you can now wash your hair, so I looked her straight in the eye and said ‘thank you’ !!!
Good luck with the ultrasounds and biopsy, if needed, tomorrow and I hope the ENT makes a sensible decision on the lumps and bumps you have.
You really do not need the stress of your wonderful Red Cross/Macmillan Cancer Driver Volunteers being disbanded, what a loss for you all.
I will be thinking of you all over the weekend.
Please let us know how you get on and you make the most of the rest, books and music, you deserve it.
Be kind to yourself you are going through a lot at the moment.

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Thanks you so much for those heart warming and sincere words Erica, (My bottle is getting (fuller by the minute) I’ve had the lesion out, and are both Basil C

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Sorry, I appeared to have pressed the send button prematurely. I was told that they may not have cleared one of them out, sufficiently, so there is a small chance that they will have to dig deeper. (Just getting over the three week driving,exercise, and shower ban) it’s enough to drive you to drink (Joking am tee total.)

The neck biopsy has been done, so I await reults of that. As soon as I have these two issues dealt with, they will carry on with trying to source my stomach pains. I’m assuming that I will be (Bottle full) by summer, can’t wait to get my ‘Bulbs’ planted

I hope your own situation is stable at the moment, and you are enjoying life. All the very best, and thanks again for the kind words. Ron

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Hi @Vindicatrix When I had my first op for skin cancer, with skin graft, in 2016, the plastic surgeon talked to his colleague who was preparing the skin graft from my leg and informed him as he cut through the layers of my skin, I thought it was just ‘scalp’ and then skull.
I hope you get your neck biopsy results back soon.
Then I hope you get your stomach pains sorted.
Enjoy planting your bulbs, very satisfying.
Yes, I really am enjoying life, thanks, I went on a long, stunning walk today and because of looming showers there were not many people about.
I was a lucky girl and got home just before the long needed rain appeared.
Bulbs need sun and rain to flourish, don’t they.
Take care and let us know when you have further information and enjoy your gardening, fresh air and contemplation time.

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Gosh Erica, I have made so many replies of thanks lately, I cannot remember to whom, so forgive me if this is a repeat. But thanks for your reassuring and kind words. I hope you are enjoyiing a period of ‘Good Time’
at the moment, we have good to grab every little bit we can. All the best Ron.

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